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”

Letters to my Mama… part 5

Dear Mama,

I haven’t written in awhile, everything seemed to plateau, I think the last time I wrote was about three months ago and tonight it seems to be pouring out of me, literally and figuratively.

I miss you, and when reading my last post I wondered if you missed me too, if all you wanted was for someone to bring you water, rub your back and tell you it was going to be ok, because sometimes when I get caught up in the burden of being a caregiver, I forget how hard it must be to have Alzheimer’s.  Because whilst I care for you and do everything for you, it must be a very lonely and sad place to live for you, because it is for me too.  A while ago I was watching Lilo and Stitch and there is a line from the movie that says

A while ago I was watching Lilo and Stitch and there is a line from the movie that says “what must it be like to have nothing? not even memories to visit in the night” and when I think of that, it breaks my heart, because my mind is so full, at times I feel glutted by thought and yet you have nothing, maybe you do have things, and maybe I am being awfully negative, but it seems to me as though there is not much available to you anymore.  A few memories surface every now and then, you smile occasionally, but for the most part, you seem sad and alone, and I am stuck in my sadness and my aloneness over here, and it doesn’t seem fair that we are doing this separately, together.

I miss you, Mama, looking back at photos of the past is the worst, seeing you how you were, seeing who you were because that life seems so far away, even just six months ago seems as though it was a lifetime ago.  I saw photos of you and me from our trip to New York, it was such a different time, you had just started having your delusions but you were still my Mum, and I miss you. I miss that.  I miss us.  And part of me feels burdened by this caregiver role, but the bigger part of me doesn’t want to lose you, in any capacity, not by you going into a home, and not by death. It feels messy at the moment, I miss like I am a mess, because I miss you, I need you, I need my Mama.  I get jealous of other daughters and their Mum’s, of the relationships they have, the time they get to spend together, the conversations, the advice they get, they give, the comfort, and it feels so empty to have you here as you, as the woman who sometimes looks like my Mama but can’t communicate with me. It’s a mess Mama, and sometimes I just want you to help me clean it up. I will write again soon, but for now, just know, I love you and everything will be ok.

K xx

 

Friday nights

Disclaimer: This is an honest real account of what my life is like caring for a person with Alzheimer’s, and whilst I appreciate your concern please avoid giving me advice on what you think I ‘should‘ be doing. I have regular respite, I have regular counselling and have a great support network.  Also, I swear a bit in here so if you aren’t into swearing, avert your eyes now. Thanks for reading.

It is 9:42pm on Friday the 4th of November 2016 and I have just thrown my guts up. Martha went number two in her diaper for the second time today and I couldn’t handle it. As soon as I saw it I just couldn’t even handle it, I felt this huge adrenaline surge that manifested itself physically. And whilst I was trying to clean Martha up, I am also trying to not throw up on her, literally trying not throw up on her and not on the carpet, and I’m running to the door with the diaper, yelling at Martha not to touch anything and I throw up on the doorstep while I reach for the bin outside. And Martha has gone into the bathroom and come out and is heading for the couch and I am screaming at her “get back in the fucking bathroom” while my body rejects most of what I have eaten today onto the kitchen floor.

And so I finally get to the bathroom and there is shit, everywhere. So for the second time I have to clean my bathroom, and by this stage I have a bucket and Martha is in the shower and I am simultaneously throwing up into my sad blue bucket, while I shower Martha. I give her instructions, I turn her around, I throw up, I cry, I yell, she tries to turn the shower off, I turn it back on and she is clean and it feels as though I am covered in vomit. I instruct her to dry herself while I attempt to clean the bathroom and I AM IN HELL, I have tears streaming down my face and I’m throwing up and I can’t handle it and my mind has gone crazy, and Martha has left the bathroom. I find her in bed, naked and I want to flip the fuck out. I honestly want to throw the biggest mutherfucking hissy fit, but I don’t, I tell her to get up, put this on, put this on, I walk away to finish cleaning up some of the mess and come back and she has at least got a new diaper on before she has gotten back to bed, so I stand her up and dress her. Get her meds give them to her and shut the door.

And it is as though my mind and my body are separate, because my mind is going mental, it is spiraling quickly somewhere deep and dark, but my body is carrying this sad blue bucket, throwing up and wiping shit off surfaces and cleaning vomit off the floor, and then when my mind and body finally sync up, I am able to ask; “is this my life now?” and “if this is my life, how long is it for?” Because I am exhausted and I am lonely, and I am trapped, I am burdened by a choice that I made to care for Martha. And tomorrow this will all change and of course I will be grateful, and I will care for her and respond to her as a daughter, but right now it feels impossible, because what I most want is for my Mum to rub my back, bring me water and tell me its ok, and instead all I can see is a stranger with sad eyes who won’t let me have a shower without trying to get in.

Alone

I’ve been going through some stuff, some psychological challenges, physical challenges, realisations and realities and have allowed life to get on top.  It isn’t all bad, I have recently launched a new charity, a new business with a friend, and a new business importing crystals to NZ.  I am at uni studying counseling and feeling challenged by my peers.  I have good relationships, sisterhood friendships, I have good sex and late night chats, I eat well, too well, I have a PT who pushes me, I smile, I joke, I laugh, I care, I love, and yet, It is so lonely being a caregiver and recently more lonely than usual.  An only child is a hard thing to be when your parent becomes dependent on you.  I do the best that I can and after three years I think I have found the balance of lifestyle and managing martha that I so desperately need.

For the most everything about caring for martha is manageable, it is expensive and sometimes this takes its toll. I need to learn to manage my money a lot better, but part of caring for myself is going out so finding that balance has been difficult.

I rely on friends too much, I often worry myself with how appropriate it is to bring martha to events or outings with me.  I often don’t have a choice, or lack of organisation has meant I must bring her. I think I could just stay home, not go out, but I know if I isolated myself any further it would spell disaster.  It puts me in a tough position. My friends, my few friends who I rely on entirely too much are all I have. I pay people to care for Martha. I get some funding to do that, but nothing near what it costs. I have no family help and it frustrates me, no brothers or sisters, my closest cousin lives an ocean away and I feel isolated from the family I do have in Auckland.  I feel isolated.

I sit down and start typing, as I type I pray, I pray to Martha’s spirit, to her soul. I ask for her comfort and love, I tell her I’m sorry that I have isolated us, I haven’t meant to. I tell her how hurt and mournful I am about losing dad, how hard it is, every day.  I tell her I am sorry she doesn’t see her family more, but that I can’t communicate with them, I was never really one of them and even more I feel further from her family than I ever have, I tell her how I feel and how hurt my heart is.  That I am still holding so much anger from when Dad died. I tell her spirit that I don’t know if I can let it go.  I know that family is important, but I think for now Martha, that family is just you and me.

I let my mind wander. I repeat the words just you and me, they break me. It’s just you and me and the sheer horror that one day it will just be Me starts to sink in, again. Please don’t leave me Mama.  You are already so far away from me, don’t go any further.

The battle of Anger and Guilt

Anger floods me, it steals my breath and breaks my heart all in one foul swoop. Angry about so many things, the world, martha’s illness, martha, situations with friends, for friends, family, everything.  I feel suffocated by the world, by it’s problems, and yet life feels good.  Business ventures, relationships, lifestyle, it all feels good, this is when the guilt sets in.  Because I shouldn’t be angry, look at everything I have. In this moment I know I am about to spin out and in my head I imagine a master of ceremonies, vintage dress, a maroon velvet ensemble, and with his megaphone he yells “let the games begin.”

Tonight I stood in front of martha yelling at her for not telling me that she needed to go to the bathroom, I yelled about how this was the third time today, how I didn’t want this, I repeated over and over that I.DID.NOT.WANT.THIS. She looks at me vacantly, I have no idea if she understands the words that are pouring from my mouth, if she hears what I says but I worry that her own shortness of breath is fear.

I stand in front of her and tug at her clothes for her to undress, frustrated I hurry her and she complies.  Internally I battle guilt and anger, they both make appearances;

When anger hits I become breathless, rigid, stern and possibly frightening, when guilt swoops in I become teary, remorseful, agitated, I want to break down, I want to throw the mother of all fits.  

This all unfolds whilst I undress Martha for her fourth shower of the day. She is in the shower, I systematically wash her, command her, hand her things, shampoo her hair, rinse, turn off the shower.  I hand her a towel and as I walk away from her to fetch clothes I yell ‘dry yourself’ when I return, she hasn’t.  She is still standing, holding the towel in one hand while the rest of it soaks up the water in the bottom of the shower. Anger takes a hold again. I close my eyes and count, I manage three seconds and it reminds me of the last time I had ink to skin. Towards the end of my last tattoo I could only manage to count to three before starting again, that three was devoid of anger, but the three was for control.  This felt the same.  I was counting to three to gain control. I systematically dried her, efficient, devoid of affection, I commanded her through to her bedroom where I dressed her, her expression did not change. I closed my eyes again, one, two, three. Handing her clothes, instructing her what to do.  We finish, guilt has taken over, I want to say sorry but the words are stuck.  She gets awkwardly into bed, it looks uncomfortable, I feel the anger starting to rise, I force a few words from my mouth, I glare at her and she shifts into a more comfortable position.  I can’t read her expression, it is the same one she has had all day, I can’t read her face and it infuriates me.

I leave her room, I pull the door shut behind me and breathe. I hadn’t realised I have been holding my breath the whole time.  Anger and guilt are still thrashing it out, I try to calm my mind, I tell myself this always happens when respite is close, she is getting worse and you should be prepared for that. I flurry myself around the house, tidying, cleaning, putting things away. I take a valium to aid with the increased surge in adrenaline, another story starts to play out in my head, my frustration with a naturopath.  I let it play on for a few minutes before closing it down. I slip myself into bed, frustrated, angry, guilty, sad, lonely, mournful and the only thing I can think to do is type. Attempt to find some peace. So I type, I share and I hope that someone will read this and say this happens to me too.

Much love,

K x

Mama, I miss you..

It has been a long time since I put fingers to keyboard in an attempt to write a blog post. It has felt as if I have gone through a war, an emotional war, both sides of my brain at war with my heart. Processing emotions is hard, I don’t know if it is hard for everyone but for myself, I have found it extremely difficult.  Feelings of extreme loneliness, even when I am in the company of people, plague me.  When I sit with Martha, I feel a profound loneliness, not because I am physically lonely, or even emotionally lonely, I have people I can reach out to, but because I miss my Mum. I miss my pre-alzheimers Mum.

I live in a world, where I am a Mother to my Mother and yet I don’t feel Motherly a lot of the time.  It hits me the most when I am in need of a Mum, when I feel sick, sad, if I have had my feelings hurt, if I feel low and I need a Mum, I don’t have one.  I know that many people don’t have mothers, and possibly I should just be grateful that mine is still with me in some form, but sometimes I just feel tired of being my own family.

Feelings of anger and frustration as I feel abandoned by my parents. What was once a family unit, disintegrated over night, and whilst I continue to work through the grief of losing my Dad, I have only just started to work through the grief of losing my Mum, while she sits in front of me.

The frustration of things such as getting my Mum to eat sometimes becomes too much, we can barely get through a meal these days. When I know she can feed herself I still have to tell her to eat almost every bite.  I can’t eat a meal myself without stressing out, freaking out. I want to yell at her, scream at her “eat your fucking food” but I don’t. At desperate times I spoon feed her, and we both hate it. I feed her fast and furiously, soft foods like yoghurt or porridge, so I know she has had at least something. My head screams, I am not your Mother, I am not your Mother.  I ensure she goes to the bathroom, I make sure she flushes the toilet, washes her hands, I put her to bed, tell her stories, I care for my Mother, and some days, it breaks my heart.

K x

Mothers Day Giveaway

With Mothers Day just around the corner I want to honor all the amazing women out there, whether you have children or not you are a giver of life, amazing beautiful women of the world. So I have a little give away for y’all.. Tell me what it means to be a woman or tell me about an amazing woman in your life, in the comments or by private message and go in the draw to win this sweet prize! You can either have it for yourself or nominate a special woman you would like it sent to!

Much love, K x

Your vulnerability makes you..

Lately I have had a few conversations about my writing, most of it positive and it is so affirming to hear that people think I write well but also that my words offer an insight into the world of living with dementia.  It is amazing when I can connect with people in the community because of the page and my writing.

But some of the conversations about my writing has been perplexing to say the least, I have written about this before.

Making yourself vulnerable is the strongest thing you can do.  I don’t find it easy to ask for help, I put it down to my only child syndrome. I think a lot of people do; but in an ever changing world where you can be in contact 24/7 an easy way to communicate without directly asking for help is to post something. Write something. Show your emotions in some way that takes it away from directly having to ask for help.  So when I write about the way that alzheimers impacts me it is my way of asking for help. It is also my way of relieving the pressure that is building up.  I write about sad things, happy things, frustating things and the likes.

This makes me vulnerable, it makes me open to criticism, it makes me open to idolisation, it validates my own self worth and in the eyes of some it makes me appear weak. It makes me appear too emotional, too angry, bitter or unstable.

But don’t get it twisted. Being vulnerable is the strongest thing you can be.  The power it takes to write out your emotions, share your emotions at any level is an amazing feat.

So to anyone who has ever felt as if sharing your emotions is a hard thing to do, it is, you might be viewed as weak or vulnerable. But know this, you are strong, you are amazing and you are perfect!

K x