I hate you. I hate everything you have done to me. I hate you more for what you have done to Martha. I hate the highs and the lows, this crazy roller coaster ride that you have forced me on. I hate roller coasters. I want to be selfish and live my life in the exact way I want to live it. I hate that you have made another person dependent on me. I never asked for this. If I had wanted that, I would of had a child, and at least reaped the rewards of raising a small human. Instead, Alzheimers, you have left me with hatred for my own Mother. In this state while she tells me I’m stupid and pathetic; I hate her.
How is that fair? This afternoon we held hands and played a game, we talked about our day and shared an ice cream. How can you create such a monster in someone and expect me to just be there? Why would you do this alzheimers? Why would you wish this upon me? Upon anyone?
You have stolen the best of Martha. Left me with this person. We have been enjoying our last three weeks which have been filled with laughs, and cuddles and drugs. Mainly drugs. Three tablets a day standard, four if it’s bad and five if it is starting to get out of control. It is. It’s out of control. Alzheimers you have Martha right now. Consumed her. Consumed me. WHY!? I can hear her talking to you. I can hear her spitting hate at you Alzheimers, spitting hate at me. You are a cruel beast.
When will our suffering end? The magic is getting less and less.. I see the magic fading and as I stared into the eyes of another carer, I saw his magic was mostly gone.
Would death not be better Alzheimers? Better than this? Better than the cruelty that you insist on spreading upon Martha; on Me? Why must you take everything that we have built so hard to retain? Why would you take someones dignity? Pride? Self?
You will not win Alzheimers. I have my memories for now, I have the sweetness of Martha kissing my hand. The pure bliss she experienced as she laid eyes on Shaan just a few days ago. I have my childhood of making pancakes and watching Star Trek curled up beside Martha. I have this and you will not take it from me yet. When you come for me Alzheimers I want the world to know that I will not leave without a fight. That this, writing, capturing is my lasting memory. My magic.
You will not beat me.
I am not yours.
We just moved in with friends. Good friends. Great friends. Angels on this earth; and I feel like I am suffocating. I pray, I hope that this will pass quickly.
It’s an interesting thing merging lives together, I was content when I lived in Christchurch, a familiar supportive crew that did their own thing, supported me when I needed it and loved me and Martha unconditionally, I was happy when it was just me and Martha. Although it was a trying time I was able to let Martha and I have some alone time, we were able to fight and cry together. We were able to act like children and dance in the kitchen, sing songs off tune and enjoy each other. But now through my own volition; I feel judged. Watched. Insecure. Sad, but mainly I feel embarrassed.
By no fault of our friends I feel this, it is just the way I am, the way my brain is wired. I feel so exposed in my insecurities and no longer allowed the freedom of how I have solely parented Martha. It is a joint effort. Oh how my heart hurts. All my greatest insecurities about who I am as a person are surfacing, what if this whole time I have been caring wrong? Is this what every carer fears/feels? Is this what society does to us? Turns carers/parents/guardians into insecure creatures of habit?
What has spurred this? I went to the gym at 630am, I ran some errands and then at 845am I came home to find Martha not here. But finding evidence of her alzheimers. The washing basket askew, pictures unwrapped, butter left on the bench. Signs Martha has been here and bored. It is unlike the time when I returned and she was not here, I knew she was with our new friends, but it was still distressing. Usually in my selfishness and need to put myself somewhere near the top of the list I will leave her alone so I can get to the gym (it is good for both of us to spend time alone), let her peek and poke while she has the freedom to do so. We might argue when I get back, but usually I will go around and put things back in place, sigh, curse under my breath and then tell her I love her. Not now. Now I can’t leave her alone without her disturbing others. It is suffocating.
Not only do I have to think about Martha, but my brain and my heart are filled with concern for the comfort of others. We have just moved in and as time passes and as the house settles and as we get to know each other it will get easier, it is still early days. I keep reminding myself of this.
But what if this never happens? What if we never settle? When will things be easy?
I have to believe that for every dark night, there is a brighter day…
Following moments of happiness last night we delved into moments of true sadness and desperation this morning.
Martha has spent the last twelve hours angry, agitated, frustrated.. Telling me how much of a stupid fucking bitch I am. One of the hardest things I have ever had to hear as human but more so as a daughter.
My mother talks with real hatred towards me, most of my reaction and response to her is in love, I try to calm and reassure her, keep my tone calm and quiet as she tells me I’m stupid, I’m dumb and repeats you fucking dumb bitch. I know she doesn’t mean it, I know it is the disease. I become paralyzed by fear as she says she wants to hit me. I repeat it’s the disease. She wants me to go. It’s the disease. I tell her I love her. The other part of me, a small but childish part reacts with hate and anger. I forget the disease and for seconds that pass feel hatred towards her as my mother. I want to yell at her and tell her I hate her, I want to yell at her and tell her I wish I was dead, I want to yell at her and tell her I wish she was dead. I stop. I don’t yell these things. I stroke her arm again and tell her it’s ok.
There are seconds of calmness before she starts again, becoming frustrated and angry. I rub her arm to try and calm her, she pushes me off her and threatens to hit me, again. This time I restrain her. Footsteps up the stairs. Bonni is here. In those moments I feel confused. This is my weakness, at 630am I feel weak. Embarrassed. I don’t want people to see us like this. I am disappointed in myself. How could I let it get like this? I want to say, please please go away.. But of course I don’t. Deep inside me I know that I need this. I need support. I need help.
We both try to calm her, she listens to Bonni; Mum and I start to have a conversation. She says I don’t tell her anything, the reactive part of me wants to say you just can’t remember but I agree with her, tears start to roll down my face as she tells me off for a sin I never committed. She thinks the tears are for her, that the tears are because I am apologetic. The tears, my tears, are for me.
My brain is no longer flooded with anger it is a small ripple, I remember the magic. The feeling I had the night before as I lay and watched her before we headed to bed.
I leave her sleep and start to type.
This is the nature of the beast.
‘If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic’
The last 7 days have been 7 days from hell. Martha became so affected by her alzheimers that I was no longer able to care for her safely and she was admitted into Auckland Hospitals Secure Unit for Older People. Work became over bearing and a real challenge, I made poor eating choices and I only managed to get to the gym once last week. My emotions have been so up and down that I am nauseas from the roller coaster ride and I am sure those closest to me have whiplash form my every changing moods.
The stresses of the past few days have passed and I have worked through a lot of damage that was being created inside my head. On many occasions over the past week I have been reminded that caring for Martha is similar to that of caring for a infant/small child. Not in a developmental way but in the way that at each moment something can happen that will reshape your world. I am still learning how to deal with Martha’s daily progression as alzheimers takes more and more of her. Of late Martha is confused about who family members are, she has no idea what city we live in and will open about 4 containers of yoghurt a day but does not finish any. It is frustrating and sad. My heart breaks every time something new happens, every time Martha doesn’t remember what a fridge is, or the name of her sister. This all weighs heavy on my heart and soul and when I think back over the last week I cut myself some slack and know that all that I have felt is valid for my situation.
But then the magic happens, in this very moment, as I lie in the comfort of someone else’s bed, and listen to nothing but fingers tapping on keyboards I am bathing in the knowledge that I am happy. The emotions I have had and the way I have been feeling as of late seem so far away it’s like I am a different person
Just 12 hours ago I was agitated and nervous and scared that I might have to start medicating my depression. It was just 24 hours ago that I was seething with anger; 48 hours ago that I was constantly thinking about the sweet embrace of death, and 62 hours ago that I was looking for a fight from anyone that dared get in my way.
But right now I feel renewed that I have found my equilibrium again. Martha is back in my care and we are managing a lot better. After being in our health system that is somewhat disempowering at times she has come back to me and wants to engage one-to-one, be physical and contribute to the household. It is so nice to be in this moment where for snippets of time Martha is my Mother.
It is nice to be cared for and looked after by friends. It is nice to be flooded by good news and know that I live in a community of generous people all willing to donate to a Good cause. I am reminded once again of the magic that alzheimers has bought to my life, of the love that so many people have for us, and for the amazing person I am and am becoming as Martha and I walk on this journey. Some days will be hard, sad and frustrating and somedays will be magic. I am prepared for that.
‘If you resist it’ll be cruel to you, if you let it in, it’ll be magic!’
At the end of two weeks of full on work, I can say with conviction I AM EXHAUSTED. More than that I am near breaking point. My head is constantly filled with what I need to do, what I haven’t done and what I have been doing. I have slipped into seriously bad habits of eating and my only saving grace in that department is that I have still managed to get to the gym at least 2 times a week with my amazing trainer Si.
Work has been this mythical evolving creature. Each day it changes and I with it, the rangatahi I work with have heard my grumpy mum voice more than I’d like to admit and I think we are all looking forward to having a small break from each other. PHEW!
Martha on the other hand does not comprehend the same level of exhaustion.
She can stay up till all hours of the morning, she doesn’t need to have that same level of energy that I need to get through my day. She can nap at any point she likes, she has no responsibility to me or the world.
We do a constant dance of love and hate, I tell her I love her before I drag myself to the gym in the morning. I hold and kiss her hand to help keep her calm. I get frustrated by her in my exhaustion and I lose my temper a lot more. No longer do I utter the words Mum or Mama, but always Martha. I feel myself detaching from her and my heart is tearing in two. We fight. She yell’s. I react. I am becoming the 16 year old me that I do not want to become, but I play straight into her delusion.
Exhaustion is winning at the moment. It has taken every last reasonable part of me and has left me with tears. Constant tears. Driving, my eyes water as Martha candidly talks into her delusion. I drop her off and can’t wait to escape as quickly as possible for fear someone may see my tear stained cheeks. Tears stream as I tell her for the 20th time to have a shower and get ready for bed. I fight back tears as she talks louder and louder, telling me to move and she doesn’t want my help. My pillow is damp from sobbing into it at 2am, begging Martha to get into bed.
“Please Martha, just get into bed, please, I am begging you”
She walks down the stairs and I sit up in complete agony to follow her and bring her back to bed. My body is starting to shut down.
At 8am, after a mere 4 hours of solid sleep I put toast on for her and think to myself, I need a mum. I need someone to look after me for just one day, to help me out, to help me deal with things. I look up at Martha, still in her PJ’s, hair unbrushed, muttering. Tears start to sting my eyes. I miss you Mum.
I close my eyes, breath deeply. Tomorrow will be easier. Just a good nights rest. A chance for my body to heal. Martha needs sleep too.
The night rolls around far to quickly and we dance again, the usual dance of love and hate. Showering, pajamas, it is all a dance I know too well but Martha constantly forgets the steps.
I think to myself;
“I’ll just go to bed, Martha can put herself to bed, I just need to get some rest”
At 2am I am rudely awoken by a door slamming as Martha is frustrated with her delusion, my brain fills with sadness, anger, regret. I should’ve put Martha to bed many many hours ago.
I think back to my last post, to the pure happiness I felt as Martha danced at Coco’s, holding the hand of a man. An embrace she has not felt in 16 months. I love you Martha, I am so happy you could experience that moment however fleeting.
I get out of bed, my broken body to match my broken heart. I guide Martha back to bed and kiss her hand.
“Shhhhh, it’s time to sleep”
She lies down, still chatting.
“Shhhhh, Martha, it’s time to sleep now”
She stops talking and falls asleep. I can’t move. Fear has a hold of me. I need her to stay asleep for as long as possible.
The alarm goes off at 630am and it’s too early. Martha is peaceful. Tears start to surface, I am happy. She looks like my Mother. She sounds like my Mother. This is the Mother I remember.
“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”
Today I was asked ‘How is Martha?’ Most days I am asked this questions and I stumble through an answer;
“Yeah, um, yeah she is ok, well, ah actually she isn’t, it’s been a bit shit lately, she is getting worse..”
But today at 7am when I was asked for the first time of the day, I could confidently say;
“She is great, she had a really good afternoon and evening yesterday and it’s good. When she is good, I’m good”
I had left Martha at 645am and dragged myself to the gym, each morning that I do this, I am filled with fear and guilt. Fear of so many things but mainly that whilst I am away at the gym Martha will leave the house. Guilt that I have left her alone, and that in my absence she will become frightened.
I force myself to put myself first, what do I need to keep going? What is the best thing for me? What is the best thing for Martha and I? This is the constant war that rages in my head. But on days like today, I don’t have that same fear or guilt. I am confident that Martha will be ok for the mere one hour where she is not being watched by me. I am confident that I am doing the best thing by both of us.
We move through our day fluidly, many more people ask, ‘How is Martha?’ I can smile, Martha is with me. We hold hands and share secrets. We communicate at a different level. Recently all I feel like I am doing is telling her off for anything and everything, or telling or to do something but as of late we have been able to have conversations. I have been able to learn from her again and we understand each other a little better. It has returned to how it was a few weeks ago where I could hold her hand and laugh with her, and whilst she is still chatting to herself I can calm her and reassure her. This got lost for a little while where we were frustrated by each other and unable to communicate properly. I was angry, my anger was not with Martha but with my situation. I was thinking too much about my life, about the sacrifices I have had to make, about the path I had to take. I was putting this onto Martha, when actually I needed to just focus on being present. Being grateful. Being happy.
She starts to participate in conversations again and can comment on things she is observing, she listens to other peoples conversations and she nods her head. She mumbles yes, yes.. She smiles and it reassures me that she is connected to this world. She is asking questions, like where are we? This might seem like a strange question but for Martha it is curiosity, something that alzheimers takes is your stability in your surroundings. She is present with me and needs to know where she physically is. She is no longer stuck with the voices inside her head but here in the present with me, she still slips into her world and that is ok, I can squeeze her hand and remind her I am here. That she is safe. I tell her I love her. She tells me she loves me too and I smile. Words I have not heard in a while, a parent telling me they love me.
In these moments I am a daughter.
I want to capture these moments and bottle them. These are the moments I live for. These are the moments that keep me going. This is the magic!
If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!
As defined by Oxford dictionary;
Hope – Grounds for believing that something good may happen..
Alzheimers in its cruelty is not a disease that gives you much hope. As a degenerative neurological disease it is designed to take every last inch of the person it has set its sights on.
First it takes things like your keys and cell phone, it puts them in mysterious confusing places and then eventually loses them altogether. Then it comes for your livelihood, it takes from you the job you have worked for the past thirty years, that job that you lived and loved, it snatches that from you with a dash of humiliation.
Next it comes after your independence, you can no longer be trusted to be alone. There is an immense fear from your family that you will either wander off and get lost, or burn the house down. You lose the places where you put your possessions. Frustrating signs start to appear on cupboards, fridges, drawers marked with “CUPS, GLASSES, FRIDGE, T-SHIRTS, PJ’s.” The signs become perplexing as your brain starts to lose the ability to read.
You start to lose the people you love. Not through choice of either you or them but because alzheimers has decided to steal them from you, to erase the memories you have of them and not give them back. You start by forgetting names, you stumble through conversations “oh yes, that person, with the long brown hair…” then you start to lose faces. Familiar faces become unfamiliar. Friends become foes. Family becomes invisible.
Alzheimers does not stop there. It continues to take, until it has everything. Until it has left you with the shell of a person. It takes your ability to walk and talk and feed yourself. Alzheimers only stops at the sweet embrace of death. But it’s damage is not just limited to you. It takes from your family, your partner, your children and friends. They lose you. You no longer are the person they use to know.
On the onset, alzheimers looks and feels hopeless.
But during this time something else happens, you lose your judgements, your inhibitions. There is a period of time when you are not weighed down by the judgements of society. Where you pull funny faces with your daughter, and took nonsensical about life. Where you talk about stories of the past as if they were happening right now. No longer are you concerned about how the world perceives you and as alzheimers clears your mind you become happy, content in your world and what you are doing.
This is Martha.
Whilst I become frustrated by her being lost in her own world she is perfectly content there. She smiles to herself, laughs occasionally. She is the happiest I remember her being for a while. She converses, she enjoys herself, she passes no judgement on the outside world. She can become frustrated with her world but when I try and summon her from it, this agitates her further. At times I need her to be present with me, to move with me and be here, but I am learning to let that go. I am learning to let Martha be the happiest she can be in her world without my own fears, judgements and needs coming in to play. The most alive she can experience in her moments of fading memories.
This gives me hope, hope that we still have bright days ahead of us, hope that alzheimers does not define us and hope that one day with my predisposition to alzheimers I will feel the same relief and happiness that Martha has. I will no longer be inhibited by the world we live in today. I will be satisfied by the conversations in my head. Alzheimers will not be my defining quality and the way in which I exit the world, but my happiness, my joy and my love will be how the world remembers me.
“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”
At 2am Martha is awake, moving, muttering and turning lights on. This meant at 2:03am I am awake, moving, muttering and following the lights. After I yell for a minute or two to try and get Martha back to bed I concede, get up and find her on the couch. We both sit in the bright lights of 2am, disillusioned by life. Martha fully immersed in her delusion while my brain starts to flood with thoughts of frustration, work, life, love, stress, career, study, travel, the list continues to grow with every moment that passes us by at 2am.
‘Mum, mum, let’s go back to bed. Its 2, we need some sleep’ I plead..
‘I don’t know, I can’t find her, I just can’t find her, I don’t know what to do, we will have to call the police’ She replies to her delusion…
We play this game for 15 minutes, I talk to her, I plead, I beg. She responds to her delusions, concerned and worried.
I stand, my brain begins to war with itself. To medicate or not to medicate. I find the medication the doctor prescribed ‘just a bit of a break, for Mum and you’ they said, I cut a sleeping tablet in half. The noise of water rushing from the tap at 220am startles Martha from her delusion. I have mere moments to get her back into bed before the delusion steals her from me again. I push the pill and a glass of water towards her, ‘Drink’ I demand. She stands, I rush her up the stairs, into bed for what seems like hundredth time that night, but actually is just the 5th.
‘It’s time to be quiet now Mum. No more talking.’ I whisper to her, stroking her arm.
I can see her eyes move under her eye lids, the need for her mouth to keep talking.
‘Mum, just try to relax. It’s ok, it will all be ok, you just need some sleep.’
Her body softens, her mouth opens slightly, the sweet embrace of zopiclone and exhaustion have taken over her body.
‘I love you Mama’ I whisper and kiss her hand.
My words, my actions, my gentleness are so far removed from what I want to say, from how I feel. It’s 230am I am exhausted. I want a night of sleep that is uninterrupted by worry and delusions. I want a day, a moment, a slither of my past life where all I was, was selfish, self centered. In this moment I want my Mum and Dad again, I yearn for moments in time where I was the child and Mum and Dad were just that, Mum and Dad. My mind spins, I close my eyes. I begin to repeat four simple phrases;
Please forgive me
I love you
I block out all other thoughts, I repeat, urgency in my repetition, I need this, I need my own forgiveness, I need my own thankfulness, I need my own love. Sleep takes me away and the next time I open my eyes its 8am.
I hear Martha’s chatter. I kiss her forehead.
“Try get some more sleep, it’s been a long night’
The day has begun.
‘If you let it, it’ll be cruel to you, if you let it in, it’ll be magic!’
As Martha and I go through the journey that is Alzheimers it becomes more evident that our roles have switched. Looking into the past I realize I am now repeating much of my own Mother’s behaviors as a parent, on my own Mother.
I remember being a teenager and Mum repeatedly telling me to get out of bed. I remember being a young child and staying up late in my room playing. I remember learning to tie my shoelaces and how difficult that was. I remember being panic stricken when I would get lost in the supermarket and the joy I experienced when I saw Mum again. I remember being/feeling dependent on Mum and Dad for everything.
Martha is remembering and un-remembering. I tell her to get out of bed, I repeat myself and become frustrated, I imagine she was frustrated with me when I wouldn’t get out of bed. She stays up late conversating with herself and I remind her to sleep, over and over. I attempt to reason with her on why sleep is important. She no longer remembers how to perform certain tasks, tying shoelaces, putting on her seatbelt or opening jars. I guide who through the process with the same patience she had for me. I learnt and retained the information, Martha no longer does. I see the panic in her eyes when she loses sight of me at the supermarket. I see the joy in her smile when she finds me again. She is safe. She is dependent on me. I am her life force.
I never thought I would be a parent at my age. I get frustrated by her, I feel as if every time I speak to her its negatively, do this, do that, hurry up, quickly, shoes on, shoes off, hurry up! Is this what parenting feels like? Self doubt? Am I doing it right? Am I screwing it up?
I love her. An immense powerful love that brews deep in the heart, it is a love I have never experienced before. Is this what parenting feels like? A love so strong you would give your own life?
I worry. A constant nagging worry about her safety and wellbeing. In my darkest moments, in my frustration, I worry. Is she warm enough? Has she eaten enough? What else can I do? Is this what parenting is? Worry that moves you to your core.
I hold her hand, I kiss her forehead, I tell her I love her. I give everything for her, I do everything for her. I want her to be happy, safe, warm, loved. Is this what parentings is?
‘If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!’
This time last year I was in preparation for heading to Rarotonga with my mains from 463… For me it was a mixed experience, on the day that we were leaving the 19th September was also the day that my beloved child hood home was going up for auction, it had been almost three months since dad passed away and I was beginning to learn what it was like to be a full time carer for Martha.
This trip was something I had been looking forward to since the day we booked it (pre Dad passing) but as it loomed closer I started to panic and fret. I would no longer be occupied by life itself and would have to think about myself. My immediate panic was that in one swoop I was selling my childhood home and leaving the country. As much as I love the people I travelled with the depression part of me just wanted to nurse my wounds alone. How could I face a week with people when all I wanted was to lie in the dark and cry? This was the trigger for my conscious experience of depression. In that moment I wanted to take all I could form this experience whilst I knew it was happening. I was well aware that the cloud of depression was raining on me hard and I needed to learn from it.
I spent as much time alone as I could in my thoughts, processing and filtering. What did I want? What was my life path going to be now? Would this be my last holiday alone? Where would we live? Would Mum come to Christchurch? When? I would I afford this? My mind raced the whole time.
I smiled occasionally and laughed when I could, I joined everyone for meals and adventures around the island whilst the whole time my heart and brain were at war over how I felt. The rational part of me continued to scream “YOU ARE ON A BEAUTIFUL TROPICAL ISLAND, BE HAPPY” as my heart continued to break and want to hide from the world. I reminded myself, this is ok, you are ok, this is all a natural part of grief. On the 26th September it had been 3 months since Dad passed. I wanted to be with Mum. I wanted to share my pain with her, I rang and spoke to her. She didn’t know the date, time, or year, my need to share with her became irrelevant as we talked nonsensical about our days. I wanted the comforts of home and it wasn’t possible. I hurt, this wasn’t fair. I wondered if my heart would ever repair itself or would it be broken for ever?
A year on and I have to say my heart is still broken, and maybe losing the first man you love is something you never recover from, but the ways in which I cope have changed. I know my own symptoms of depression and when I am in the full swing of it. I take a learning from each experience of depression. I look after myself mentally and physically. I talk to friends. I spend time with lovers. I hold Martha’s hand and tell her I love her. I can smile genuinely and laugh sincerely, I function as a human being in society and don’t need to spend so much time alone in the dark crying. I use my supports to lift me out from the darkness. I am still learning how to deal with grief and it is not something you ever get over and know that with each step I take into the world it gets easier to manage, the hurt is not as raw as those first few months, I am not consumed entirely by death.
I am life.
‘If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!’