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

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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

When it hurts, it hurts

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

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

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

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

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

K x

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😦 

Lost

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

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

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

I cried for the loss of my Father.

I cried for the loss of my Mother.

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

I cried because I’ve lost myself.

 

A life worth living..

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Dear Katie Hopkins,

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

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

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

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

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

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

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

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

Peace out! xx

Letters to my Mama… part 4

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Dear Mama,

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

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

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

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

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

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

K x

A few helpful tips..

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

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

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

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

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

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

    Imagine someone saying this to you and then walking away?

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

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

Letters to my Mama.. part 3

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

Hi Mum,

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

Kyrin xoxo

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Today I learnt..

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

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

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

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

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

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

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

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

Today I learnt to listen.

Thank you.

K x