When it hurts, it hurts

I am hurting. The pain is radiating from my heart and spreading down to the tips of my fingers and toes. It feels as if my hair aches and my finger nails are digging into me. This pain and grief feels familiar, common but also unfamiliar. I have not bathed in grief for a long time.

It has come slowly over the past few days, creeping up on me, when I felt the first wave hit me, I imagined seeing the grief in the distance, hoping to avoid it, skip around it or bury it deep down but as I stepped closer and closer it became evident that I was not going to be able to any of that.  I was heading straight for it.  The signs were right there, my attempts to ignore it have seemingly made it worse.

Martha being sick was the trigger.  An alzheimers sufferer who becomes physically ill is like putting together a puzzle with no picture. I stumble and fall through her symptoms, I feel helpless and hopeless. I feel sad and overwhelmed by the responsibility I hold but even just the thought of having to have her in full time care breaks my heart, I start to feel unbalanced by it all. I feel inadequate, a symptom many carers experience. I start to feel angry at the injustice and then when I cannot contain all of the emotion I feel the loss.

I feel the loss of my Dad and as I hold a water bottle to Martha’s mouth, I feel the loss of my Mother. I hold back the tears that well as I watch her sip water like a child, I stroke her forehead and tell her I love her. I long to tell her how much pain I am in, I want to share my sadness with her but I hold it in, I hum to her as her eye lids droop and she finally falls asleep. I lay and watch her for a while and when I know she is truly asleep I move myself out of the room, into the quietness of night and let the pain and grief drown me. Tears flood, my heart aches. My attempts at distraction are fruitless, I must experience this pain.

I know now that it will pass, it will not stick to me forever, I will move through it. When you first experience this pain it is as if you will be stuck here forever, but now as I sit in all my painful glory I know that it will leave me, or perhaps this time I will be strong enough to leave it. For now, I will experience the pain, learn from the pain and eventually  I will leave the pain behind.

K x




Tonight I cried, really cried; sad, sorrowful tears.

I knew they were coming, I had preparing all week for this moment.

This precise moment when everything would tumble from me and I would get lost in my loss.

I cried for the loss of my Father.

I cried for the loss of my Mother.

And then, after I had cried my mournful tears of grief.

I cried because I’ve lost myself.


A life worth living..


Dear Katie Hopkins,

It has been almost a year since you wrote this (and various other things about dementia);

“Dementia sufferers should not be blocking beds.  What is the point of life when you no longer know you are living it? Bang me over the head.”

I, fortunately, have only just stumbled across your careless words. From having a search through your twitter account it appears that you are quite opinionated on various matters of the world. You share a lot of your own hate speech on immigration and politics and that is your right to do so, as a white woman (your words, not mine). You write a lot and whilst I have concerns about some other things you have written those are not my priority, I am not as passionate about immigration or other things you have written about, but I am passionate about dementia.

This is because my Mother has dementia and I care for her full time. So when I read things like what you wrote it makes me really hope that you or anyone in your family ever gets dementia and if you do that instead of someone saying to you ‘you are taking up a bed, I’m going to end your life”  they say something like “it’s ok Katie, even though you don’t remember me I will take care of you..” or “not to worry Katie, we now have a cure.” I also really hope that if someone in your family gets dementia that your opinion changes on the worthiness of living.

But here is what I would like to address, it is clear you do not suffer any form of dementia so what gives you the right to deem if someone knows they are living or not. Is it because they can no longer care for themselves that you think that they are blocking a bed, is it because they can no longer talk or walk that you think someone with dementia doesn’t experience pleasure, or is it because you have no real understanding of what it is like to suffer from a serious illness.  For me, whilst my own Mum doesn’t remember who I am half the time it is pretty clear she knows she is living, for other friends and families who are further down the dementia track, it is also clear that the person with dementia knows they are alive.

I personally don’t think life is determined by memories but perhaps by a fleeting moment of emotion experienced; joy, pain, sadness, happiness.. You get my drift? Just that small snippet of experiencing life is worth it.

So when you say things like what you said it hurts the people who are working tirelessly for a cure, who go to work every day to care for someone ‘blocking beds,’ families and friends are saddened by your words because how do you know if someone with dementia knows they are living or not.. Perhaps instead of sending that kind of negative energy into the world you could be aiding research to find a cure, you could be supporting families experiencing a dementia diagnosis or perhaps you could be educating yourself on what it is really like when you are diagnosed with dementia.

Anyway Katie, that is just my two cents worth of opinion on the matter of dementia and like I wrote earlier, I really hope it never comes for you.

Peace out! xx

Letters to my Mama… part 4


Dear Mama,

This morning your delusions had the best of you, when I came in to say Hi you were so sad. I sat with you and asked you what was wrong, with your beautiful eyes looking up at me, you whispered ‘I think I have to go away.’  I reassured you that you were safe with me, that I loved you, that you could stay here forever. This pleased you, but only for a moment. This disease crept back into your brain and stole the last 30 seconds from you and you were sad again. I kept telling you that you were safe with me, I kept telling you I loved you, those few moments when you knew that are heaven to me.

We started our day, you were distant from me, I missed you. I wanted to hold hands, to tell you secrets but you weren’t interested. Instead you preferred the comfort of your music. You sang with gusto and I smiled at you, you were content.

Our day was filled of ups and downs, sorting, sharing photos of times gone by, smiles, songs and lunch. By the time we started to head home it was mid-afternoon, as we stood next to the car ready to get in you looked as though you wanted to cry and scream.  I came around the side of the car to see what was wrong and you had wet yourself.  I told you it was ok, you were ok and that I loved you. This was the second time it has happened in public and I’m so sorry that it is happening to you. I kissed your forehead and told you it was ok, I got you in the car and you had tears running down your face. I wanted to cry with you, cry at how unfair it is that you have alzheimers. I wanted to reassure you that it was ok, I wanted to hold you and make it better for you.

We got home and I undressed you, showered you, you could hardly move or do anything for yourself. Mama, I want you to know that, that’s ok.

I fed you dinner, I held your water to your mouth, I put you into bed and told you I loved you.

Mama, I will always be here for you. I love you.

K x

A few helpful tips..


This time of year is a hard time for families caring for someone with alzheimers/dementia.  Services shut down or go to a skeleton staff, family and friends go away for the holiday season, it is hot, tiring and the days are long. Carers are often exhausted and will look that way. I know this from personal experience.

Alongside caring comes a sense of inadequacy, self doubt, self loathing.. Am I doing enough? Am I enough? Why aren’t they happy? What am I doing wrong? On a daily basis I am plagued with these questions and on a daily basis I battle a demon that says I am not enough. I work hard to fight those demons off but sometimes it all gets a bit much. With the added stress of being in Martha’s company 24/7 and seeing family and friends more frequently it becomes harder and harder to not only deal with that feeling of inadequacy from within but also the pressure that society puts on you around this time of year to be happy, cheerful and oh so merry.

My most hated question as it comes to social gatherings with families and friends is “why don’t you put her into full time care?” at least every other week I get asked this anyway but as we near the end of the year it becomes more frequent and comments are made more offhanded.

So as a carer on behalf of carers I urge you to be careful with what you say to loved ones during the holiday season. Hopefully here are a few helpful tips

  1. If you want to have an open and honest conversation about putting a loved one into full time care please let your family member know that is what you want to do, schedule a time and come prepared. Don’t ambush your loved one when they might be feeling vulnerable and unprepared, Christmas day is not the time for this kind of comment or conversation.
  2. Don’t make an offhanded comment without any follow up, it isn’t nice to be made to feel you aren’t doing a good job, imagine this when you say “why don’t you put them into care?” is actually..

    – why don’t you put your children in boarding school?
    – why don’t you get a divorce?
    – why don’t you quit your job?
    – why don’t you put your pet down?

    Imagine someone saying this to you and then walking away?

  3. Please don’t point out how exhausted someone looks, it is a tiring job that around the holidays becomes a 24/7 job. Instead maybe offer to come over for a couple of hours or have them stay with you for a few hours. Drop by with a cooked meal, mow their lawns, bring in the washing and my favorite.. bring coffee and/or wine and relax together.
  4. And lastly, let your loved one know that they are doing a great job!

    I hope that this helps in some way.. Happy Holidays! xx

Letters to my Mama.. part 3

I found this letter today I had written in January 2012 to Martha.

Hi Mum,

I miss you. I’ve been reading a book on Alzheimers and I am sad that you have to go through it. But I love you and I know when you forget me I’ll still love you and you’ll still love me. But that’s a long way away. Remember I’m always here when you need me and I might get frustrated sometimes but that’s because I’m scared. But every day I get braver. I put in this picture of the taj, I’m glad you stayed with me the night before, thats when you explained what is happening to your brain, we cried together then because we both knew one day we would lose each other but we know we will always love each other.

Kyrin xoxo


Today I learnt..


I sat at a table today surrounded by greatness, I felt child-like and small, surrounded by lives that have been lived for more than 60 years. I sat and listened as stories and memories were shared like currency and I was envious.  I was envious because I want this but I must be patient; my time will come when I too sit at a table of old souls and share my memories and lessons of life.

I sat and listened as your lay your life in front of me, I was silenced by your words, not because I was scared, hurt or sad but because the force in which power emanated from you was so powerful it left me speechless. Today I learnt many lessons from you, I listened, I absorbed. I wasn’t silent because I had nothing to say, I was silent because I was eager to learn.

I listened today and I learnt about truth for the first time in my 30 years. Isn’t that a funny notion to finally learn the meaning of truth at 30?  Today you taught me that there are two different truths to live by, one is the absolute unwavering truth. The actual events past/present/future that cannot and will not change no matter what you do. The other is the truth that sets you free. Today as I drove home I ruminated over the truth that sets you free. The truth that has the power to change your own world by believing in it. The truth that positivity exists, that negativity is harmful, that too much sugar is bad for you and that death is eminent, but the biggest truth I learnt; the truth that enabled me to walk away with a smile was the truth of true gratitude for life.  Today I will not take another day of my life for granted. Days will be hard but I already know that, today you gave me the gift that my life is valuable.

I listened to you and watched you today, the words and wisdom you wanted to impart on your granddaughter, I watched her and wondered if she knew the gift that she was being given in this moment, I wanted to whisper in her ear, take the lesson now, take it now and blossom with it because it won’t be until you are my age that you will know it’s true value.

I sat and listened with open heart and open mind today.  I felt honored that you shared your final journey with me, even though this was not the last time we will meet, it was with such pride that you shared with me how your body would leave this earth and whilst I was struck by a profound amount of sadness I was filled with love, that you as a woman I knew only as a child was speaking to me now as an adult and sharing with me the most intimate of details.  I watched as you described your final moments on this earth, I prayed silently that they would not be soon but as you explained everything to me, the love of your life oozed from your body.  You spoke so fondly of yourself, so kindly, so highly.  We were speaking of death and yet I was envious.  I am envious that you know how much you are loved.

I, as a woman of nearly 30 am still learning, I am still in my infancy of emotional maturity, but today as I listened, you spoke to me, I listened as a woman to another woman who is the greatest inspiration of my life.  I listened with a type of lust for life as you shared with me your lessons, maybe you shared them on purpose but I think perhaps they were always there I just wasn’t listening properly.

Today I learnt lessons from you that I was not expecting to learn.

Today I learnt the meaning of truth, pride and love.

Today I learnt to listen.

Thank you.

K x

Ramblings of thankfulness

Over the past few days I have seen or been reminded of how fortunate I am, and most New Zealander’s, Australians, English.. Well just how fortunate the western world seems to be.  Here in New Zealand we are not experiencing war, serious drought, poverty that can’t be solved, no one I know in New Zealand has experienced the true meaning of hunger, by this I mean days, weeks without food.  Currently our greatest debate is about changing the flag (my personal opinion is that this is a waste of money, but someone voted for John Key, so all is fair? Right?) and whether or not we should let Chris Brown into the country. So as I sift through facebook and see all this tragedy unfolding, war, refugees, shootings I am reminded that I, in my warm house, with a fully stocked fridge, a car full of petrol and gym memberships galore am pretty darn lucky.

Then Martha gets home and I am reminded once more that I am probably the luckiest person out (right now).  I ask how her day was, in the 60 minute drive home Martha has completely forgotten where she has been.  She does her ritual of bathroom, tea, fruit and sitting down for the afternoon. We make small chat, which by the way, if you know me, I am terrible at and we have a cuddle. Then I get a whiff, she needs a shower. When you have alzheimers you don’t only lose memories but you start to lose the connections between body and brain. The signal that goes from your bladder to your brain fades and on it goes.  In some it is quick and I know carers who completely care for their person, they toilet them, shower them, change them, I am thankful I only occasionally have to help Martha have a shower (we also get assistance from an agency).  So I shuffle Martha into the shower, stripping her, helping her in, I soap her and wash her, shampoo her hair and condition it. She stands, turns when I tell her to, covers her eyes so she doesn’t get soap in them and I turn off the water when it is done.  As I help dry her I am thankful that she is ok but also that I am able to care for myself. I don’t need constant reassurance, I don’t need help to shower, I can prepare my own food, I pay my own bills.

How hard it must be at the age of 67 to be so dependent on another being just for survival.  She follows me needing me to show her where her clothes are, I have laid them out. I learnt early that if left to her own devices she will find clothes that aren’t so suitable, we sit and chat while I dress her, underwear, pants, bra, singlet, shirt and socks. I kiss her hand and brush her hair. I dress her like she is a child but I am her child.  I find myself feeling thankful that I am able to do all these things myself.

I remind myself that this isn’t the hardest thing in the world, but also that everything is relative to each individual.  I tell Martha about my day as I make her a cup of tea and she smiles at me, I wonder if she knows how much she has lost or perhaps for her this is now her normal.

Love, K xx


Letters to my Mama… Part 2

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Oh how I miss you Mama. The other day you gave me a big hug and said you loved me very much. My heart blossomed with love because I miss you knowing who I am. We smiled and held hands but very quickly this disappeared as your delusions took over. In those few moments I wanted to tell you so much about the world. But what I craved the most was the knowledge that I was your daughter and you were my mother.

I talk about the difficulties of being a carer, how taxing it is, how hard it is to care for you sometimes but I seldom talk about how much I truly miss you. I miss you so much at times that I feel as if my heart has turned to dust. We still have our things, you still rub my back, you say things like “I always do this for you and what do you do for me…” it darkens my day; I want to scream at you this isn’t fair! I do EVERYTHING for you. But I enjoy the tenderness and the reminiscent behavior of childhood as you stroke my hair and rub my back. I feel like I am constantly mourning for you, never knowing when Alzheimer’s will take a little more of you.

Sometimes you ask me where I’m from. I reply, Tauranga. You ask about my parents and I say my Dad passed away and my Mum is very sick. You look at me with sadness and tell me I should spend more time with my Mum, I hold your hands and whisper to myself, I am. I want to cry and weep. I want you to know I am still here.  I want you to know I exist.

I want to tell you how tired I am. I am tired of pretending that this is normal, that I am fortunate and that I am ok. I tell myself these things to get by. I write about how grateful I am that on some day in some week you remembered I was your daughter but inside, brewing inside I want to scream this isn’t fair. Why should I be grateful for something so normal? But I do, I cling to those days as if it were my last breathe, but days are no longer days but only moments. Those moments are so far and few between that I wonder when will the last moment be.

You are in respite at the moment, I want to bring you home and not leave you there. When I visited and you looked at me and said “am I coming home now..?” I smiled at you and kissed your head and said, ‘soon Mama. I will come get you soon.’ As hard as it is, sometimes it is harder to be away from you. I miss your connection to me I miss you knowing me when you are with me and that is hard, but when you aren’t with me I just miss you and I don’t know which is harder.

K xx

The stuck-ness that is life..

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There is little reward in being a caregiver of someone with a degenerative neurological illness. In fact most of the time it is draining to have to give so much. Lately I have been down, depressed with wintery blues and can’t get out of the funk of winter. I feel helpless and hopeless even when things are not. I can recognize this, seek help, take meds, make a gazillion cups of tea and still I will be stuck in the stuck-ness that is my life. I do things, I get out, I go out, I laugh and act like a normal person and then as day turns to night I slink back to my real world and am once again enveloped by the life of being a care giver. I feel sad and lonely even though I am seldom alone. Then a small tiny miracle will happen, not from friends dropping by, phone calls, meals out, flowers (although that is mostly what keeps me going) but Martha comes back. For the briefest of moments she is happy and we are happy together.

Days ago on a grim day with water pouring down, dark skies Martha wanted or perhaps needed to get out of the house. She does not often ask for much. I think as words leave her she loses the ability to ask for things, I demand answers of her and I shouldn’t but I do. But on this occasion she says “are we going out?” I don’t want to go anywhere. But to honor Martha’s diminishing capacity to ask for things I embrace what Martha wants. If she wants it, we shall do it. So I get out of my pajamas, which I have been in all day and we head out into the pouring rain, huddled under a tiny umbrella and into the car.

Where do you want to go?

She replies, jovial; I don’t know. We can just get a drink or some kai.

What do you want to eat?

Oh anything

We pull out and for the first time in a few weeks Martha looks accomplished, she has made an achievement and for that brief moment she feels victorious in her ability to persuade me to go out. We make repetitive chit chat. The weather is bad, it is raining so much, it is so cold. We repeat this over and over until we get closer to somewhere with food options. I’m thirsty Martha says, ok well lets get a drink. We carry this on until we parked. She smiles and it is bright and happy and enthusiastic. I am pleased, I am unburdened by her burdens and there is no more talk of people stealing her things, hurting her people or trying to capture her. She is content and so am I.

I take a moment to be grateful, I take the moment to thank myself for being able to do this for her and for me. I am grateful that for the first time in what feels like forever we have a moment of happiness to share.  I tuck this into my memory bank as we order dinner, I watch in wonder as the world passes us by. We look like any other Mother and Daughter dining and yet we aren’t. Every 30 seconds or so I answer Martha’s questions, ‘we are in Auckland, we live here, you live with me’ I follow that with a reminder to stop talking and start eating. ‘I am eating..’ she replies grumpily, frustration is creeping back in for both of us. We finish our meal and head back to our world.   I close my eyes as we settle in for the night, was it just a dream? Sleep finally comes to steal us both away and the next day comes far too quickly and we start all over again.


K x

‘If you resist it, it will be cruel to you. If you let it in, it’ll be magic’