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

 

 

From my healing heart x

So this is the last thing I will say on this;

Wednesday morning I woke up and checked Facebook (the perils of a social media addiction), the previous day I had posted what I had thought was a funny picture of Kim Kardashians daughter North West, I wrote a caption “my face when someone is offended that martha doesn’t remember them.” It was followed by hashtags #wellduh #shehasalzheimers.  It made me chuckle, until Wednesday morning.

I don’t know who posted it, I don’t even recall word for word what it said.. but I still feel what it did to me. Because what it resonated in me was disappointment in myself, I felt lousy, I felt small and I felt useless.  Sitting on the edge of my bed reading these words was like a slow knife pushing through to my heart.  All of my insecurities unravelled in that moment.  Then and now; I know this was just the push on an already crappy few days/weeks. I was humiliated, who had read this? Is that what people think?  My over active brain started to spiral down.  My page, my sharing was never intended to offend anybody ever and now I have.  I cycled through emotions quickly, anger, frustration, sadness and then I had desperate longing to let that person know who wrote the comment that it is never in my nature to offend you with my posts. There is no PR team, it is just me, a struggling daughter losing my mother trying to make the best of the situation.  I am trying to use my page, my writing as a tool to heal and grow.  Studies show that carers in any capacity have a lower health standard and should find healthy outlets to explore emotions.  This is what I am doing.  This is a good example of how I am doing that, I am sharing, I am letting it out, because if I bottle it up. I lose it. I can’t do my job, I can’t care, and everyone loses.

So my message to that person and for any other person who might want to provide feedback; BE KIND. Do it with kindness, do it in a way that the person won’t feel humiliated or embarrassed.  Private message that page, carefully construct your sentences, ask yourself how you would feel when you read that message.  Would it make you feel empowered to read it, would it make you feel like praising that person in thanks..? Ask questions like what is that person going through? What am I going through? On a scale of how offensive is it, how should my reaction be? How does it offend me? Know your audience and act from your heart.  And if you did that, if you truly answered all those and felt good that your feedback would uplift, empower and help.. then Thank you, because perspective is everything and you are offering yours.

And for the person that specifically provided the feedback that so unceremoniously unravelled me.. I truly hope you don’t read this. I hope you removed yourself from my page.  But most importantly for you, I want you to know.. there are so many other things you should be offended or disgusted by, my survival of alzheimers is not one. 

From my healing heart,

K x

be-kind-always-blog-image

 

Am I your daughter?

Imagine the horror of standing in the same room as your mother as she screams at you “who the fuck are you?”  Tears streaming down your face, fists clenched while your own Mother tells you she doesn’t know who you are, what you want or what you are going to do.  Imagine standing there as your own mother slams a door in your face and recoils in fear from you, because she has no idea who you are.

This is my reality.

This doesn’t happen often, it has only happened a few times, a violent outburst of fear.

But it does happen.

On a daily basis Martha can not connect the name Kyrin to me, the two are different.  The image she has in her mind of Kyrin, is not me.  Sometimes, on a good day she knows my name.  She calls me Kyrin, that is bittersweet because on the daily she claims she has no children; that her and her husband couldn’t have children and a sadness sweeps through her as she resigns herself to the fact that she never had a child.  I am not even fortunate to be a distant memory, I am no longer in her memory as her daughter.

I ask and probe her about who I am, she just shrugs her shoulders and says “you’re Kyrin” (thats a good day) “and how do you know me?” “I just know you, from a long time ago” no mention of me being her daughter, no mention that we are even related.  At first this made me crazy, every single time. I would punish myself by continually asking her, I would seek her acknowledgement of me, I would plead with her to remember me.   The words Mum or Mama are just nicknames now, they hold no meaning to Martha but when they escape my mouth on the odd occasion they mean something to me, they are longing words of my childhood. I grasp at them.

On a bad day she cannot even utter a word, she looks at me blankly as if I am a stranger an intruder. On her worst day she is fearful of me, that I have taken her from her home and I will not return her, she is fearful I am keeping her from her family and she does not want to be with me.  She hides from me. I throw tantrums, I yell and scream, I tell her I hate her and that this isn’t my fault.  I stand in front of a closed door, with Martha’s weight pressed against it as she keeps me out and I yell at her “this isn’t my fault, I’m doing the best I can, I’m doing my best!” I know it is fruitless to yell, I know it does nothing but aggravate our already fragile situation, I don’t say it for her  I say it because I need to hear the words I need to reiterate that I am doing the best I can.

On most days though she is my shadow, she follows me with her eyes and if I travel to far from sight she follows me with her body. She clings to me, knowing she is safe with me.  I protect her from the world.  I feed her, I bathe her, I clothe her.  I protect her from the probing questions, the staring eyes, the unfamiliarity of the universe as her brain forgets this world.  She stays close, she smiles when she sees me, she holds my hand and lets me take care of her; this is most days. I am grateful for this, I am grateful to be able to care my my Mother, to love her and show her how I love her, I am grateful to still grasp at my Mother.. But for Martha, I am not her daughter. I am her carer. I am her friend. I am her person… but; I am not her daughter.

—-

And if she does not remember me, please do not be offended if she does not remember you.

K x

The Grief journey..

Grief is a frustrating thing to experience and when my dad passed I felt so unprepared for his leaving. No one had explained to me how torturous it would be, how no body is grieving the same as you and how painful it can be to watch as friends and family return back to their normal lives while you still wade through the days and years of grief. The finality of it all can be overwhelming and yet, we all go through it at some stage. It is a natural part of life that is seldom talked about.

Recently I changed the photo on my phone screensaver. Two and a half years it had remained the smiling face of my Father. Every moment of every day I got to see him, he was with me, staring at me. In the last two years I have added various mementos to my body that remind me of him, a poem, a tui, permanent beautiful scars that I carry with me so that I know he is close and yet the familiarity of his face on my phone I could not let go of. On a regular basis it occurs to me that I will not see this face in the flesh again, I will not see it change as he aged, I will not see his smile or his tears any longer. I held onto this photo on my phone, still grasping onto hope that perhaps this was all a nightmare and soon I will wake up to a call from him saying sorry he hasn’t been in touch, things have been busy. However just recently I moved through into another stage of my grief. Maybe I had gone through all the stages and was now transforming into acceptance, maybe.. maybe not. I changed the photo not because I didn’t need to see it, but because it felt like it was time. In that feeling I reminded myself it had been over two years since I had changed the photo. Was I strong enough to do it? Mentally it was a great preparation. I had to really convince myself that it was ok, that I was not turning my back on him but that in fact I had just learned to cope in other ways without him.

So I changed it to the beautiful green blue of the ocean, it calmed me to look at it and still within held qualities of my Father. His love of the ocean and nature; his serenity and inner peace but mostly it reminded me of his calmness. Time and time again I realize how much of a process grief is, how far I have come in my journey and that the journey of grief will never end.

There is the all too familiar saying “time heals everything..” is it true? Maybe, I don’t think so. I don’t think you ever heal. You learn to cope better, manage every day life better, you learn to smile again and re-emerge as the person everyone once you knew you as. Grief becomes part of you, your broken heart does not heal but you learn to live in that brokenness. Some days are easier than others, some days you get through the whole day; weeks or months can even pass by. Other days you are not so lucky, the pain of loss is so strong; it is crushing and some days are just days, where you realize someone you truly deeply love, loved you too.

Love, KB x