I’m sorry

Dear Mama,

I’m sorry.

I’m sorry for all that I have done to cause you grief.

I’m sorry that I sometimes hate you.

I’m sorry that sometimes I yell at you.

I’m sorry for the thoughts I think.

I’m sorry that you are no longer the mother I need.

I miss you, Mama.

I’m sorry you lost your husband, your lover and your best friend.

I’m sorry I lost my first true love.

I miss you Dad.

I’m sorry that I get angry for no other reason than I am angry at the world. Mama, I am not angry at you.

I’m sorry we can’t communicate anymore.

I’m sorry I didn’t get to know your stories before it was too late.

I’m sorry that I cannot always be the pillar of strength.

I’m sorry this is our life. I never wanted this.

I’m sorry.

K x

Tonight I showered you

Tonight you needed to shower. Your nurse hadn’t come this morning and you needed to shower.

I got you undressed and left you to shower on your own.

Usually you can and it is fine, a few minutes later you were back in your room getting dressed.

I told you to stop, I could of been gentler. I took your hand and got you in the shower.

I got the shower puff and put soap on it. You stood under the water as I washed your front and back.

You leant forward and wet your hair, I added shampoo and massaged your head.

You rinsed the shampoo out, and I added conditioner.

When I said turn, you turned.

You were capable of having a shower, but just needed a bit of extra help.

I turned the water off and gave you your towel. It made me smile because I remember this scene from when I was young. I remember you doing this then wrapping me in a towel.

How did this happen to us?

You got out of the shower and I left you to get dressed.

Later that night, I lay with my head on a pillow in your lap while you brushed my hair.

I remember this scene.

KB x

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Fear of the unknown

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So I have done a bit of writing over the past few days and have published it to the blog, but not posted it up on Facebook. Fear is what is holding me back. Fear of judgement. What I don’t want is for you to think that it is like this all the time or that I am impacted so severely all the time. I use writing as a tool to heal on my darkest days but most of the time I spend in the light.

In regards to my latest post, I understand that the words were said as a joke and it is my responsibility to say something straight away like, that’s not a funny joke, however I ask that you please be careful with your words. Sometimes something you say may sound like a joke but actually it is not. For me personally as I head further into my depression my ego becomes stronger and words do affect me in huge ways. What I want you to understand is that three words such as ‘She hates you’ are not the maker of me or the demise further into depression, what the words that people speak do, is push me in different directions. Unfortunately the words ‘She hates you’ pushed me into my own insecurities and dark thoughts about myself.

A little context. Martha no longer communicates with me. She can still communicate. Listening to her answer questions and talk happily to someone brings about feelings of jealousy and hatred. It also brings about the feeling that Martha actively chooses not to communicate with me. (I do actually know that this isn’t true) My ego can easily turn Martha not communicating with me into “She hates you.”  A little more context. The life I lead now is not the path I thought I would be leading, at some moments in time I hate Martha. Not a day goes by where I do not resent this situation. During this process my ego can easily turn my own anger and frustration into this. “Well you hate her, so she MUST hate you.”

As I move forward in my mind through this year I already know I will spend many more days in the darkness and really need to be kind to myself to heal my never ending wounds. I know that a lot of you will think that the best solution is for Martha to go into full time care. This is not the path I want to take right now.

Last year whilst Martha was in a respite facility in Christchurch I over heard a paid carer call a woman who suffers from dementia ‘a little bitch,’ this was one of the better facilities in Christchurch (I made a complaint straight away). If this is happening in the middle of the day with people from the outside there I would hate to see the level of care provided in the middle of the night when you have 3+ dementia sufferers with incontinence and sleep issues.  The horror stories of rest homes far out weigh my own insecurities to currently care for Martha. I will however access respite for sanity reasons.

I do not know for certain what the future brings. This year regardless will be a tough year. It will also be a year of many great success and highlights. I will inevitably lose more of Martha as alzheimers takes more of her brain. We will also share moments of pure joy.

I have not lost hope, but I have also not lost fear.

KB x

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”

She hates you…

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She hates you. It was a joke. It was meant to be funny.

She hates you. Three tiny words that have completely shattered me.

She hates you. Just words at the end of the day.

She hates you. All the insecurities of my thoughts have tumbled out and spilt before my eyes.

She hates you. Well I hate her.

She hates you. Smile. Laugh. What ever you do, don’t cry!

She hates you. You’re a terrible person. Your own Mother hates you.

She hates you. I hate myself.

She hates you. It was just a joke. Laugh. Jokes are meant to be funny.

She doesn’t hate you.

She loves you. You love her.

KB x

Toilet paper patience…

For the 20th time today I have told Martha to put the toilet paper back in the bathroom.  I go to use the bathroom and there is no toilet paper, I walk past the bathroom and there is no toilet paper. Martha has it stacked in her wardrobe like a prize.

At 7pm I have no more patience left for this silly game.

I begin trying to get an answer, this is not the first time I have done this today but the first time today I have done it with such angst and need for an answer. I try to reason with her, explaining why taking the toilet paper out of the bathroom is not good. I ask questions like “how would you feel if you went to the toilet and there was no toilet paper?” The response is “mmmm” and it fuels my anger.

I want to yell, WHY CAN’T YOU JUST SPEAK TO ME! WHY CAN’T YOU JUST TELL ME!

I can feel myself breaking. This is too hard. Right now it feels too hard.

I force her to put the toilet paper back. It is a waste of my energy because as soon as she leaves my sight she will go and take it and hide it again. I attempt to explain one last night why she shouldn’t take the toilet paper.

I want to lash out. I want to cry. I want to leave.

I lie down on my bed and open my laptop, my saving grace.

Today I resisted alzheimers and it has been cruel. Tomorrow I will let the magic in.

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”

Planning and preparation

2015 is here, I feel relieved, the end of the year dragged and depression was starting to eat at my soul. I have survived. With the start of a new year comes new beginnings, I have started to plan. Meals, exercise, work, holidays, goals. It all goes into a massive pile and I start to sort through what I want to achieve.

1. Keep your car clean!
2. Keep your room clean!
3…. The list is long and endless, the list keeps me focused.

I have mapped out two months worth of meals and gym sessions, vowed that I will exercise 30 minutes every day – rain or shine, because as a Facebook meme once said to me, ‘you will never regret working out.’  I plan with precision my days and weeks and it soothes my soul.

However during this planning and preparation I start a different kind. The Martha plan.

The oxford dictionary states;

Alzheimers is a; Progressive mental deterioration that can occur in middle to old age, due to generalized degeneration of the brain.

I start to prepare myself. Martha will not be getting better this year, her alzheimers affected brain will mean she gets worse. Which means, regardless of all my planning and preparing, regardless of a positive attitude, the reality is, this will still be a tough year.

I watch as Martha blinks her eyes furiously and mutters to herself;

‘Are you ok Mama?’

‘mmmmm’ This is the most she responds

‘I don’t know what that means’ I stare at her, pleading with my eyes for her to talk to me. She manages a yes.

My brain starts to buzz, but yesterday she was fine, asking questions, talking, telling me she had a lovely day.  Today that person is gone. I squeeze her hand. I say the words ‘it’s ok’ more for myself than her.

Every interaction we have I am reminded that alzheimers is an unforgiving disease, that each good moment is precious but fleeting and each bad moment is heart breaking and frequent.

I start to prepare myself mentally. I repeat to myself ‘you can’t be shocked every time something changes.’ I check on Martha, consciously or subconsciously it is now a habit to worry about her whereabouts. The feeling unfamiliar and every time we go out I prepare myself to be vigilant of Martha’s whereabouts. I prepare for accidents, I have a small bag in the car with a spare change of clothes for Martha. I smile to myself, how similar this must be to raising a small child.

I prepare myself for the inevitable, this year I will lose even more of Martha. A thought I don’t enter into too often. I will watch as she disappears before my eyes, I will watch and wait for the day that my name disappears from her lips and her light flickers off. I will prepare myself to let her go.

For now I prepare for the weekend. What will we have for dinner tonight? Should we go to the movies? I ask Martha;

“What would you like to do today Mama?”

“Oh, we could go to a movie..” Her face lights up.

I turn my phone on, find a movie trailer, “this movie?”

“mmmmm…”

I plan for us to go to the movies today. Just for a moment, for that one fleeting moment, Martha was in control. I shall honor that.

Love,

KB x

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‘If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!’

I am not alone, but I am lonely…

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I am desperate to be alone. To be undisturbed by the world. To sit alone and breathe without interference from the outside. The desperation is physical, aching heart, sweaty palms, teary eyes, I want to be alone. The most time I spend truly alone is the time I spend in my car driving to and from appointments. Radio off, windows up, air-con on. Even then I am not alone. I can hear the ding of my phone as I receive a message. I should’ve turned it on silent, next time, I think. The next time I will. I grab my phone, why are you interrupting my alone time? Ah my boss; if I don’t respond that I received the message she will send another text soon to remind me I need to respond that I have received her message. “Received, will do” I reply. Why am I letting my time be interrupted? Turn the damn phone off.

I stop, park, ready for my next appointment, my days are just a series of meetings, driving, more meetings, gym sessions and being a carer.  I flick through messages, then onto Facebook, instagram and twitter. I am not alone, but I am lonely. I shove the phone in my bag and get out. Put on a smile, I am somewhere. Each place has the same traits. Senseless conversation, the stench of hard work or is it boredom? It is hard to tell, I am not alone. Physically I am surrounded. Suffocating, and yet I am so lonely I think my heart has gone cold.

I make it through another day in a job I have stopped enjoying.  Survival has kicked in and it is now a task to work.

I make it home. One foot in front of the other. This is a nice house, nice enough. Hard wood floors, big kitchen, nice rooms, good area.  All the things you want in a house.  Martha enjoys it, everyday I wonder how long this illusion will last.

There is a hum, music plays. I greet my flatmates. Then Martha.

“Hi Martha’

‘Hi’ she doesn’t even look up.

I ask how her day was, she speaks and our exchange is done.  I haven’t been able to get what she wants for dinner from her so I just guess.  Fish maybe, stir fry, who know’s, does it matter?  She sits there, and I desperately want to be alone. She says nothing, does nothing, does not even move but I sense her.

“Martha, hang out the washing!” I say it with force to try stir her

“mmmmm” she replies

She does not move and I hang the washing out. I want to tell her, I want to be alone, but now I am responsible, her alzheimers affected brain will interpret that as “GET OUT OF THE HOUSE,” and she will leave, I have already learnt my lesson on that one. I want to say, Martha I am just heading out, I will be back soon. Fear stops me.  If I leave I may come back to an empty house.  If I leave her here with my flatmates will it look like I am taking advantage? I sit in my room, feeling trapped and lonely.  She pushes the door open, I look at her, she walks back to the couch not shutting the door.  I pray to whomever may be listening, please please I just want to be alone. I am so tired of being responsible.  Tears start to roll down my face.

Tomorrow will be better. Tomorrow must be better.

KB x

“If you resist it it’ll be cruel to you, if you let it in, it’ll be magic!”

My Martha Tips (because I really do love a good list…)

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I have spent the past few weeks in particular getting to know what makes Martha crazy. What brings on the hallucinations/delusions, what upsets and what calms her.. For each individual sufferer of alzheimers it will be different, they will have their own triggers.  Martha and I usually get a break when Martha heads off to program and we go out separate ways for the day but at this time of year we don’t get that luxury.  As I carer I am 100% responsible for her wellbeing and my own – and that is a really hard task!

Here are a couple of tips about what triggers Martha and things to think about – my hope is that for just one person these come in handy! Plus I love a good list!

1. Keep outside noise to a low, roadworks, traffic noise, general noisiness are a big trigger for Martha. She loses herself in the noise and her hallucinations start shouting at her.  She is best left with minimal noise or music she enjoys.  In the past when there has been a lot of disruptive noise I have given her headphones so she can enjoy some music.

2. Find music that your alzheimers person LOVES! For Martha anything from the late 50’s to early 60’s is her jam! I seldom have to change the song as she is happy to listen to just one song on repeat!

3. I don’t know what it is, but Martha has a bad reaction when she has too much seafood.  A little is ok, but once she starts consuming a lot her brain starts to function a lot different.  Possibly the salt? In any case, I will be watching her seafood intake..

4. Same goes for SUGAR! Sugar and Mum are like a flame to dynamite. She LOVES sugar but it does not love her back.  Like most sugar intake it needs to be in moderation. Also like any person sugar makes you hypo, for someone wit alzheimers their brain cannot process this and it is all down all from there..

5. Be kind to yourself. It is a hard time of year and I wish I was better prepared. The other night I felt myself slipping into a really negative thought pattern.  It took two days to bring myself out of it.  What I had to keep thinking was, I am doing the best that I possibly can right now.  Whilst sometimes I feel trapped in this situation I have so much love for Martha that I cannot see it any other way. So, I must remind myself to be kind..

Merry Christmas!

Love,

KB and Martha x

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“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”

Losing yourself

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I sat in the car and watched Mum push the trolley to its bay, she turned and started to walk back towards me. She turned without hesitation and I watched her closely.  It was about twenty steps and she had taken at least ten.  A car was pulling out and she stopped, if she hadn’t of, the car wouldn’t of. In that moment I saw her face. She was lost.

I waved frantically.  The car reversed and for seconds I couldn’t see her. By the time the car had gone she had turned around. I begrudgingly got out of the car.

“Martha! Martha! Come on, hurry up.”

She spotted me, relieved.

She got in the car and I held her hand, we didn’t exchange any words but I felt her embarrassment alongside mine.

I was frustrated and embarrassed by my frustration.   Why don’t I just be nicer? I thought, it’s not her fault! Why can’t she just see our car? Frustration. It’s not her fault.

It occurs to me on many occasions of every day that life is not easy for Martha.  There is a perceived misconception that because you have alzheimers and there is no worry that life is rosey for you. This, in my experience is far from the truth.

I see worry in Martha every time I look into her eyes.  I hear her words and the relief in her voice, “oh there is my girl” every time I am out of her sight for too long.  I experience the absolute bliss as I walk into the room where she attends her course and her whole face lights up.  For the entire day she has not know where I am, her brain has not been able to draw any conclusions of where I may be. Instead all she comes up with are blanks.

We hold hands, and I ask how her day is.  We walk to the car, I let her guide the way.  I try to reinstate normalcy in her life even though for both of us it is a real struggle.

I ask, ‘how was your day today?”

“Oh you know, the usual, boring..”

How unsatisfying life must be when you cannot remember what you have done the past 5 hours, the past 5 minutes. I tell her all the things I think she may have done

“It sounded like you were singing a lot today, and helping out in the kitchen, it looks like you played pool and table tennis too…”

Sometimes I lie.

I tell her grand stories and her face lights up. She squeezes my hand, in that squeeze I wonder if she knows I am lying. If this is her way of thanking me for telling her tales to keep her sane.

As much as I have lost Martha, as much as I grieve for her, become frustrated by the loss, I wonder what it is like for Mum to be losing Martha as well. To lose her independence, her hopes and dreams. To be talked at and told what to do by your daughter.  I wonder what it feels like to lose yourself?

Love you Mum x

‘If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!’

When does the feeling sad part stop?

The past few days I have been reminded of grief. In many ways, shapes and forms. My own grief and the hole it has carved in my heart and of others grief. Today I wished collectively we did not experience grief, loss or sadness. That it wasn’t heart breaking and hard.  Today I wished that grief would not sneak up on me in the cold of the night and steal my sleep, my sanity and my tears.

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I watched a tui play in the trees outside our house the other day.  I was on the edge, I was agitated, depressed, angry and hurting. Martha had no idea it was my birthday.  Part of me thinks that is petty, it is just a birthday after all, but I missed getting a phone call at 7am from Dad saying Happy Birthday; I missed getting a card in the mail with money in it.  I missed being able to talk about my day when I got another call that night asking how my birthday was.  I was grieving for the loss of both my parents; one physical and one emotional.  When I laid eyes on the tui I knew Dad was with me, watching, waiting guiding.  In this moment I felt my grief the hardest.  It was strong and powerful and all consuming, it reminded me of my beating heart and I once again felt loved.  An odd thing to experience from grief but as my chest grew tight and my eyes pricked with tears, I knew that I had experienced true love. The moment passed and I continued on with my day.

Sadness.  I was reminded of grief, loss and sadness when I received and replied to this text.. When does the feeling sad part stop?

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This is true for me.  Grief and sadness will never leave me.  I will eternally grieve for the loss of my Father, simultaneously the loss of my Mother and when her soul leaves her body, I will grieve for the loss of her body.  What I do know is that, it hasn’t gotten easier.  But it is less obtrusive.  I no longer want to break down every time I see a bald indian man with glasses and a moustache I no longer want to scream when I see Mothers and Daughters conversing and engaging and I no longer have the urge to cry in public.  I know that the grief is still there, the sadness, the loss, but it is now just a reminder.  I try to use this grief to draw on the positives, to remind me my heart still beats, that I have love and that I have memories.  It wasn’t always like this.  When the shock of death hit me and my family it was pure hurt and hatred.  Anger at the world, at the injustice, at myself.  My heart had shattered into tiny pieces and I could no longer function.  As I grew into my grief it changed and twisted as I did; for that, I am grateful.

Which brings me to today; as I casually scrolled through Facebook I experienced bouts of grief.  People I know are grieving.  In their own ways, fresh grief, long standing grief, all the same it is grief.  I was reminded of my first Christmas, only last year, without Dad.  How hard it was just to get through the day. How isolated I felt and how deeply alone I was standing in a room of about 20 people.  My heart aches for anyone who has to experience this, this Christmas.  The constant thoughts that don’t leave, “oh if they were here we would be doing this, oh I could get them this, oh this is their favorite thing to eat..” The sheer rawness of feeling so alone was physically painful.  As I start to think about this Christmas, it isn’t so hard.  I am working towards new memories, just for me, for my life with an essence of Dad sprinkled through them.

However what I will say on grief and what I know for me is…

The grief, the sadness – it never goes away.  It just becomes less intrusive on your mind, your heart and your soul.  It becomes manageable and just a reminder.  It stops defining you and then when you are ready you step forward, you do. At first small steps, then big steps, then running.  Then the grief is just there with you, it is no longer the driving force of who you are, but the gentle reminder of everything you have been fortunate enough to experience. Grief is love lost and love gained.

Much love,

KB x