After what has seemed like a massive move and struggle to establish ourselves in The City of Sails I have learnt a lot, struggled a lot, smiled a lot, laughed a lot and eaten a lot. There are so many things that I want to share with you all but I have whittled it down to a magic six, here we gooooo;
1. Vulnerability ain’t nothing to be scared of. I have always been a fairly guarded person, I blame it on my only child syndrome and having a sheltered up-bringing. I find it hard to express emotion for fear that I will be judged or reprimanded. My journey over the past year but mostly over the six weeks is that vulnerability rocks! It is not weakness, it is real, honest strength. Working with rangatahi I quickly learnt that if I was protecting myself and burying my emotions I couldn’t connect and I seemed distant. I have learnt to lean into vulnerability and use the power of love and acceptance by others to heal my heart.
2. I have to prioritize myself. In the moments where I was feeling my lowest I wasn’t doing anything to be kind to myself. I had stopped going to the gym and whilst I had some genuine excuses (the man flu counts as a genuine excuse, right?) most of it was not. I was making poor eating choices and letting negative thoughts be all consuming. This week I took most of Wednesday off doing ‘work’ because my mind and body needed to rest. I went to the gym, booked a PT session and have stocked up on fruits and veggies. I have found day respite for Mum and organized a couple of nice things for me and Ma to do. I put myself at the top of the list. Putting yourself first means you do better at everything
3. Good, honest people are the key to happiness. There are not enough words in this world to explain what my friends an whanau have meant to me this week. I received an outpouring of love and kindness from my various friends and whanau, new and old. Everyone has helped heal my heart soul by filling it with love and kindness and it has given me so much faith in the world, I will probably even vote!
4. Be wary of the highs (chemical imbalanced depression brain highs, not ah… the other high). I don’t know if anyone else has had this experience, I’m sure I am not alone but I have learnt to be wary of the highs. Following a giddy high last week it all came plummeting towards the ground with an almighty crash of a low. The low was deathly, dark and cold. It was an unforgiving space and felt just as hard and severe as the previous low. I pushed through and used my supports to get out of it, but I thought I need something more than this to get me out. Texting with a friend tonight about my wariness of highs he said, “What if you use the high to get everything sorted for a soft bounce instead of crashing?” So I have got to work on what I can do to help soften the fall. What will bring me crashing down? What will help lift me up? I am getting the cushions ready for a soft landing and hopefully an easier low.
5. Find your healing. The power of writing has done wonders for me. I have always been a huge fan of lists, notes and now blogs! It is hard sometimes for me to get going on a post, or even just an idea and anyone who has ever put pen the paper will know the silence of writers block. But I have discovered I can start out slow and easy, words, one word, two words and the next thing I have a sentence, a thought pattern, a paragraph and a post. The more I write the more my heart opens up to the world and the easier it is to let you all in to heal it. Writing is what I have turned to in my darkest moments to process, reflect and learn, and because of all of you it has been a true and wonderful way to heal. I
As always Thanks for reading! t is so comforting to walk with all of you through this journey.
Lots of love,
“If you resist it, it’ll be cruel to you. If you let it in, it’ll be magic!”
Over the past year I have gotten to know you differently. I am now your full time carer. At the mall the other day I repeated Mum 5 times and I couldn’t get your attention. But when I said Martha, you turned and smiled at me. Your smile made me happy and sad. I was happy because you smiled, but sad because with every day that passes our relationship moves away from mother/daughter to something I am scared of.
Tonight at work we did a gratitude round, and I was grateful for you. You are always grateful for me. Sometimes I take that for granted because I think you don’t know what to say so it is easy to just say me. But tonight I wanted you to know I was grateful to you and the reshaping of our relationship, and for the fact that I still have you and some days we have really good days and it is as if you aren’t plagued at all by this horrible disease.
Then when we got home tonight and I went to sleep and got woken up by banging on the door at 2am, the downstairs people let me know that water from our house was flooding theres. I went and checked and you were standing in your socks in the water talking to yourself. In an instant I was overwhelmed by so much emotion that I was in physical pain. I had so many questions for you and knew you couldn’t answer them. We argued, and every time I spoke my heart hurt because I knew it was pointless but also emotion had over ridden the rational part of my brain. I shut the door so I could clean the water behind it and move furniture around and when I re-emerged you had gone.
I grabbed my car keys and walked out the door that was wide open. When I spotted you in my car I couldn’t reason with myself to be kind. I yelled at you. I’m sorry I yelled. I wanted to reason with you and we argued in the car in the middle of the street. We hurt each other with our words, and I felt sorry for myself that in the morning you might not remember what I had said, but I would remember what you said. This was then overlapped immediately by guilt. I’m sorry I was unkind and that you were unkind too. Maybe we need to go and eat at Coco’s and remind ourselves to Be Kind?
When we were in India for the first time I got really ill, bloody delhi belly. This was the first time we talked about your disease, when I was sick and I thought I might die. Thinking about it now it was such a strange time to talk about it. I was violently throwing up and couldn’t stop shaking. I remember that evening so vividly. You told me how the doctor explained alzheimers. Like a full bottle of water that had tiny holes poked into it and over time water slowly left the bottle. That was what was going to happen to you, slowly your brain would get rid of things. Back then, 5 years ago I never imagined it was going to be like this. I knew you would lose the memory of me, and eventually dad and then yourself. But I never imagined it would be this difficult. That you would stop communicating in my world and become fully immersed in your own, to the point where our house gets flooded.
I really miss you Mum, I miss having a Mum and a Dad. It is hard not having you as a Mum, when all I want is a motherly hug and for you to cook my favorite foods I ate when I was a kid. It has undeniably been a hard year. We have been through a lot together. When Dad passed away I knew that actually I would be grieving for both my parents as alzheimers slowly stole more of you from me. I’m trying really hard, but sometimes I don’t get it right. Sometimes I let my emotions get the best of me, and I know that is ok too. After all I am only human.
Of late I have started to wonder if I am providing the best care for you, tonight we talked about you going to stay in a rest home. We both shed tears because we didn’t want that, I don’t want to be without you. The selfish part of me is scared to be alone. How terrifying it will be when I am completely alone with my thoughts. You looked sad when we talked about it, I asked you if you wanted to live in a rest home, if it was too hard with me. My delivery wasn’t the best but you said. No. Defiantly. I was happy you had such an emotive response. I don’t want you to go. We just need to figure out a way to make this work Mum.
I love you Mum. It has been a long hard year, but we have shared so many adventures and I have enough memories stored for both of us. Please don’t leave me just yet.
I’m not ready for that.
Love, Kyrin xox
If you resist it, it’ll be cruel to you. If you let it in, it’ll be magic!
Tonight I got to hang out with an amazing group of human beings, every Monday and Tuesday I am fortunate enough to spend my time with the Nga Rangatahi Toa crew guiding them through a gathering of knowledge, learning and creation process. It has been one of the most intense/interesting/challenging three weeks I have experienced in a while. Unfortunately I am finding it a real struggle to stay positive, this is no reflection on the kaupapa of the work or for lack of want, but my chemically imbalanced depression diagnosed brain is not managing that well.
I find myself in a very confusing situation, after 7 months of focusing on me and Martha I have rejoined the work force full time, currently I feel as though I am balancing on the edge of huge highs and deep lows, and the tiniest nudge can push me in one direction or another. Tonight for example we had an amazing time at Nga Rangatahi Toa, we are working with rangatahi that are really absorbing the knowledge of our peoples, our community and what it means to be part of a community and it warms my heart. The mentors and I debrief at the end of each session and I always gain so much from them and there insights into the world of our young people. When I first got to the Art Station at 2pm I was at a real low point, it was a real struggle and I was questioning everything I was doing, by the time the session ended I was on a high. A successful session, great feedback and all around good vibes. Long may it continue I hoped, I felt grateful for the opportunity of having this job so I could be around a collective healing power. Unfortunately for me, this did not last. My brain started to play tricks on me, from the time it took to leave our work space to the time I stepped into my front door, I was at a low again. And this low fed into every self deprecating feeling I have. For those of you who know what it is like to suffer from low self esteem, these lows are one of the worst. I use my support networks to try and climb myself back up, I unpack the situation of how I got to this low, I sit down and start the cathartic process of writing which helps me put things in perspective.
I attempt to write a few times, I add titles “Balancing the highs and lows” / “Always darker days before brighter ones.” I edit/re-edit/delete. I let my brain settle and sink into my emotion that I am furiously trying to push away.
I feel like shit. I want to cry. I want to hide. I want to drink/smoke/eat/run/escape. I can’t get a grasp of what I want. I don’t want to feel all these feelings. Which is followed by the rational part of me that says – YES, I am ok. And YES, I will make it through. And YES, I am doing a really awesome job at being an awesome human being. And YES, sometimes life is shit, but I have gotten through much worse and I can get through this.
I remind myself that I have a lot going on at the moment.
I remind myself that this blog, this writing process, this is healing, making myself completely vulnerable to my world, is growing and developing me as a human.
I remind myself that you, all of you, my people, fill me with love and hope and thankfulness every day.
I remind myself to love.
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
Recently I wrote the post “A lot changes in three short weeks” this was about my shock at how much had changed and what had changed for Martha. These past three weeks that I have spent with her have been equally as hard as my initial shock.
Martha constantly talks, and for those of you who have spent any time with her recently you will know what this is like. It is a constant conversation with someone else, that is now driving us a little mental. She can talk all day and into the night. On a bad night I will get an hours solid sleep at a time, and most likely no more than four hours sleep in total, and for Martha she may not get any. Last night at 2am I made her get up, go into the lounge and finish her conversation before she even thought about getting back into bed. An hour later she appeared and the chit chat had stopped. She slept a few more solid hours before the talking started again. I want to scream at the world, who is occupying her mind!!!!!! GIVE HER BACK!
She talks about this person and that person and this place and that but none of it correlates to any truth.
It is becoming increasingly difficult for us and I am constantly thinking, what next? Is this it? Is our time up? But then she will have a day, or a night, or just a flickering of a moment where it all stops and we can talk, and laugh, and dance, and smile and then all is right in the world again. I cherish these moments like they are the rarest form of life on earth, they are what keep me going long after they have disappeared. I’ve become more efficient at documenting these moments, part of me thinks I should just be enjoying them for what they are, and the other part of me needs these snippets so I can look back in time and remind myself of how good life can be.
There is no denying the journey of Alzheimer’s is hard, for Mum I can see her frustration and yesterday she was desperate for the voices inside her head to stop, at one point tears gathered as she pleaded with the voices to “please be quiet, please shut up.” All I can do is rub her arm and tell her I love her, reassure her and myself that we are ok.
I am learning so much about myself and am so grateful to all the wonderful people we have in our lives, all the snippets of information that I receive from you all are amazingly helpful. Every day I learn something new from my community and every day we are reassured that we are supported and loved.
Love you Ma x
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
The past three weeks I have been off adventuring the world. It was an interesting time away and I learnt a lot about loneliness and alone-ness, but I will write more on that later.
This is about Me, Martha and our journey with Alzheimers
I am fortunate to have an amazing group of friends in Christchurch. Dedicated to me and Mum and our wellbeing. While I was away they visited her at the Hoon Hay Dementia unit. I spoke with her occasionally and reassured her that I would be back in no time at all.
On my return the first thing I did was go and pick her up. I was shocked. Her appearance had really deteriorated and so had her mental state. I was not prepared for this. Her facial hair had grown out and her skin was extremely dry from the air conditioning, she was frail looking and a little unsteady on her feet. I took her too her room and we packed her things up, I washed her face and put moisturizer on it to try repair the damage that had slowly been happening. Our first stop was to get her upper lip and eye brows down. She looked a lot better but then I noticed the muttering. I guess after the initial excitement that we were together again her reality took over once more.
She was talking to someone, a very vivid hallucination. From everything I have read I know not to argue with her, I pat her arm and tell her it’s ok. That night we get to sleep early. I have my fingers crossed that a good nights rest will set her ok and maybe her hallucinations won’t be as bad. Thursday rolls around and it isn’t good. Her world and mine are the same to her. She talks to me as if I am here but she isn’t talking to the physical me, it occurs to me that she does not know the difference any longer and I wonder if this is how she coped while I was gone. By communicating with me, by interacting in her reality with me, when I was thousands of km’s away.
Throughout the day her hallucinations become more vivid, I don’t quite know what to do or how to explain it to others. I feel nervous and embarrassed but I know it’s fine. I know people don’t mind but it is still a challenge. I feel stunned as well, how could this happen. It was just three weeks and the injustice of Alzheimer’s starts to feel heavy again. I’m constantly telling her to just be quiet, not in an attempt to stop the hallucinations but she is becoming louder and louder. More vivid and interactive and more disturbed by her hallucinations.
We head out for dinner and I talk to her in the car, I tell her it’s ok, but she is worried about a friend, we get out and she starts walking the other way. “Mum, it’s this way” she continues to walk and I catch up with her to guide her back, she insists she is going to see our friend and becomes defiant and frustrated with me. I physically have to turn her around and march her back, she pulls against me and I feel nervous for us. Other people see our interactions and they don’t know what is going on, only that I am pulling at the arm of this woman. “Please Mum, come on, it’s cold” she wants to leave, I push down the urge to argue with her and tell her to stop being so stupid. She can’t control what is happening. I close my eyes and remind myself, it is the disease. This is not Mum.
My reality changes in an instant. I feel my world start to crumble, a thought comes back to me once again, ‘I thought we had more time.’ I want to scream at the world, I want to throw a tantrum at how unfair this is, how unfair it is to me, but how cruel it is to Martha, to all Alzheimers sufferers. We make it inside, every part of me wants to run and hide, I want to escape this reality. We sit and chat and I’m not fully there, my brain is burning, what should I do? Is this it? How will I cope? Focus – Focus – Focus. One day at a time.
I’m exhausted by the time we get home, and it is a challenge to say sane, to hold back the tears that are stinging my eyes. I get mum’s clothes, I turn the shower on, I make sure she gets in the shower, I get us ready for bed. I’m tired and agitated by this new reality. We go to bed and the talking does not stop, I reassure her that it is going to be ok. I reassure myself. It is ok.
You are ok.
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
The alarm goes off at 7:30am.
“Mum it’s time to get up.”
She leans up, surprised.
“Did you know about those people that were being mean to me, that was Peter and Clare they rung me. They are very upset and telling those peoples the truth. Those people were saying I’m a bad person, but Peter and Clare are telling them I’m not. Did you know about that?”
“Yes mum, now it’s time to get up”
“That was Peter and Clare that just rung, they are very upset and telling those people I’m a good person”
“I know Mum, it’s ok, now it’s time to get up”
“Peter and Clare called me, they are very upset. There are some bad people saying mean things about me.”
“I know Mum; it’s ok. Now get up”
“I just spoke with Peter and Clare…”
“I know Mum, now please get up, we are going to be late”
“Will you talk with Peter and Clare and make sure they are ok?”
“Of course Mum, now it’s time to get up. Come on”
It’s 830am. I hold her hand and tell her I love her; I get her clothes and lay them out. I pull back the blankets and help her sit up. We both hate this monster in her head. But we have each other and a lot of good people in our lives, and that is all that matters.
Love Kyrin x
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
By the end of October 2013 I felt utterly defeated, I was four months into being the sole career for Mum. I had lost a parent. I had packed/cleaned/moved/sold a house. I had relocated Mum to Christchurch. I was working a full time job I no longer enjoyed. I was making poor eating choice, not exercising and not sleeping. I was exhausted.
I decided it was time to start investing in myself, my mental and physical wellbeing were in jeopardy and if I didn’t do something soon I would end up six feet under for some reason or another. So I invested. Time and money were two things I could afford and so I set aside both of those things to dedicate to me. I dug out health and wellbeing books I had bought and never read; and I Google searched “personal trainers Christchurch.” Round12 popped up, emails were sent back and forth and I was all booked in!
Anxious and excited I stepped into Round12, it was humming and a general sense of excitement sat in the air along with the stench of hard work. I stood awkwardly staring at my phone not knowing what to do, where to go or who to speak with; a woman waved at me, strode over and with a big smile said “you must be Kyrin, I’m Tania – come with me.” The beautiful, wonderful, enthusiastic Tania took me down the back and we got straight into it. No assessments, no weigh-ins, no judgment. For the first time ever at a gym I felt comfortable to be unhealthy. Tania offered no-judgment of my size and for that I was overwhelmed with gratitude.
From this one session I had found a happy place. I pre-paid ten sessions (which FYI are extremely well priced) and so it began, an addiction to exercise I had never felt before. On my second session I was put to a test of 50 punches, two press-ups, two burpees’, two squat jumps. Going up to twenty. It seemed like an impossible task, and in this session it was. It took the full 45 minutes. I struggled physically and mentally to complete the task. I wanted to cry. After that session I couldn’t walk for days, it wasn’t a mental satisfaction to complete it. It was a highlight of how unfit I truly was. I was disappointed in myself. But as I continued to see Tania, and as she continued to make me do the dreaded burpee I began to gain confidence that I was getting better. Two months after this initial test, I completed it in 13minutes 17 seconds. A feat I never thought possible. A physical highlight but more importantly for me a sense of satisfaction and mental determination I had not experienced in a while.
After a quick trip off to the states I arrived back to Christchurch and was straight back at the gym, training hard, pushing myself into learning a new way of life. I craved exercise like I had previously craved cake. It was now a full on addiction and I was really starting to see the results. In my short time on this earth I have spent countless dollars on gym memberships and personal trainers, all to no avail.
Round12 offers family in its entirety; support, love, encouragement, honesty and so much more. Not only is it a world class gym, it is a caring and loving place.
Round12 offered me a chance to heal my emotional wounds as I addressed my physical inabilities. It is a place where judgment is not a word that exists, where can’t is banished from vocabulary and where you are pushed beyond your limits with an encouraging “you can do this, look at what you have already done!”
A massive thank you Round12 and an even bigger thank you to Tania for being an amazing personal trainer, a role model and an inspiration.
15.02.49 – 26.06.13
“Kia ora, my name is Kyrin, I care full time for my Mum, Martha, she was diagnosed with early onset alzheimer’s 6 years ago, my Father cared for her but he passed away almost a year ago.” I have repeated this many times in the past few months, to social workers, support workers, nurses, doctors, carers, old friends and new. To be honest, it is not a sentence I thought I would ever say.
As I sit in a room of carers, I listen to one mans story; he says in a tired soft voice “I’m so lonely, we used to talk all the time and now I have no one to talk too, she won’t talk to me anymore, we’ve been married 47 years, I miss my wife.” This lonely mans wife was diagnosed 18 months ago, she is still in the early stages of her dementia. My heart aches for him and what the future holds.
Early into mum’s alzheimer’s diagnosis I had resolved that I would not take on responsibility of carer. At the time of this resolution I had only known her 25 years, my Father had known her 40. I was her child, my Father was her friend, lover, soul mate and husband. Her memory would lose me, long before it lost him. However all that changed on the 26th June 2013 at 6:30am. From that moment on, I was a full time carer.
As I listen to other carers who talk candidly of their battles with this disease I realize as an adult child I have been able to reshape my relationship with Mum. I never had to fall in love with her, our love has always been familiar to me, she has cared for me all my life and as a daughter I feel it is my duty to show the same respect to her. I have been given the tools to be flexible. Our relationship is different now, I am a parent to her, I make silly faces with her, I prepare her meals and wash her clothes. I climb into her bed when she is frightened, I reassure her that everything is ok and that no one is coming to take her away. The other carers who are friends, lovers, soul mates, husbands and wives are not as fortunate as I am, me and Martha are able to enjoy our new relationship, I am not burdened in the same way as a partner, I am not burdened by watching the person I fell in love with 40 years ago disappear before me, I am not burdened by having to care for someone I have fallen out of love with. I am not burdened by her disease.
Lots of love,
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic