I’m moving

I know I didn’t have this site for very long, and I certainly did not use it like I wanted to.

While  I still like the name Smiling from the Shadows, I feel like I want a fresh start. I have so much more to say than just about all things dementia related and I don’t want a space where all I do is constantly vent, although if I am being honest, that’s probably what will mostly happen whether I like it or not.

In an effort to try and get myself more organised I’m moving to a new space called The Words Come Tumbling and you are more than welcome to come too if you wish to continue my journey with me.

Thanks for all the comments and support I received here, they were much appreciated.


Half here, Half there.

I’ve not been here much, although I have not forgotten about it.

It’s not that I had nothing to say, because there was plenty, I just had trouble getting the information to flow to my fingertips.

Everything seems like such a long time ago. Christmas, just a memory, another year well on it’s way.

You could be fooled into thinking that as there have been no posts, that life has been rosy, but that’s not the case. There have been good times and bad, the bad being so overwhelming that I have not had any energy or inclination left to write.

My anxiety has been running at an all time high. Thoughts of the future have had my stomach on spin cycle, couple that with money worries, work worries and then the day to day of just existing with someone with dementia, and, well there is not much more to give.

The new medication, for Aggie, not me, seems to be helping a little bit. Her mood swings and temper, while still evident, are perhaps just not as frequent. That said, on days when either flare up, they can still reach epic proportions. There are a lot of tears, both Aggie and I. I’m finding that these days I am not able to cope as well, my sleeping pattern is up the left and I am worn out from what seems like a constant stream of things to do. Work has been more hectic too, again, always on the go, which means that I lack stability, a little slot of time where I can just sit down and quietly get on with things. I suppose that is what this is.

Even though I was not writing, I was still thinking about the blog. I am no longer sure about the name, I am not sure we fit anymore. ‘Mostly Fucking Miserable’ would be a more apt title, but I am not sure you are allowed swearwords.

It’s good to write.

Feeling small..

If something is not happening for you, it doesn’t mean it’s never going to happen. It just means it hasn’t happened yet.— Unknown

I’ve worn melancholy like a blanket all day today. I can’t seem to shrug it off. It’s funny how when small blips happen they feel like mountains. An unremarkable little stone gathering pace, that ultimately causes an avalanche. Once thing after another, rendering me incapable of resistance.

I’m tired of the responsibility. I find it hard to look after myself sometimes without the added pressure of also having to care for someone else. I want to go to bed and sleep instead of having to wait until the wee small hours to lay out tomorrows medication or worry about the dinner. I want to walk around a store and buy something for my tea without having to plan for three days in advance, my already stretched finances taut with having to feed three mouths instead of just one.

Today it feels like someone has blown out the candle and extinguished the last little flicker of light that remained. I could be wrong but it just feels like all the other times and I have no one to blame but myself. I wanted things to be different, but as minutes and hours pass, that is looking less likely.

I’ve missed music. It calms me, and stills my heart as I look out the rain streaked windows into the darkness beyond, the train ferrying me home and into the unknown. I wish I could keep going sometimes, or have somewhere else to escape to, but there is nowhere, only home. Keep breathing.

I just need sleep……..

As life happens…


Mending my Broken Heart by Tim Houlihan

October 2011 was the last time I saw my on off partner of 14 – 15 years. It was a one sided relationship, simple in it’s make up, I loved him, he never loved me. I cannot fault him for this, as on the very first day I met him he told me never to fall in love with him, as he would not love me back. He was true to his word. My heart ruled my head, until that last day in October when realisation dawned, marking the beginning of the end. No tears, no looking back, my eyes had finally been opened. I swore I would never love again.

People take simple things for granted, like kisses, cuddles and holding hands. Curling up on a sofa and watching a DVD or waking up beside someone you love. I never had any of those things, and strangely only missed them when I was on my own.

April 2012, driven by a changing life, I decided I needed someone to talk to other than my friends and family. I joined a website, not having any clear idea of what I was searching for, which was my first mistake. I met someone funny, captivating and capable of breaking down the walls and taking my heart in his hands and that was all before I had physically met him. Plans were put in place and for the first time in a long time I felt happy, content almost. 4 days before I was due to meet him I had an accident, and was hospitalised a short time later for emergency surgery. I was going to be off my feet for around 2 months and out of circulation for another 4 as I learned to reacquaint myself with a leg that no longer felt my own.

He disappeared. He was no good at being just ‘friends’ and had no intention of waiting. Slowly day by day contact dwindled until eventually I asked him never to contact me again. He’d fixed my heart only to break it again. Mentally I suffered, asking myself why these things kept happening to me, as if dealing with the mental side of a physical illness was not enough. I swore I would never love again.

I think I am scared to be happy. It seems that every time I am something happens, or perhaps that is just coincidence and I need to start seeing my glass as half full instead of half empty.

I am my own worst enemy, of that there is no doubt, unable to still my brain, I always second guess myself and question everything, instead of just taking life one day at a time and waiting to see what happens. I’m scared. Scared of handing my heart to someone to have it handed back broken. I am also scared of taking the responsibility of some else’s in my quivering hands. I am unsure if I am even capable of love.

They say relationships built on friendship are the strongest. I am not even sure I am capable of being a good friend. Sometimes home life makes me want to push away the things that are closest to me, when I feel I can’t take anymore. But how can you explain that to someone.

Why can I not just be like everyone else and take a chance and wait and see. Why do I have to worry about what is ahead instead of enjoying the now. Why, Why, why….always second guessing…never still.

Wasted Days

I don’t really enjoy days off any more, they are meant to be relaxing and a chance to charge your batteries, instead it seems to leave me more stressed. If it’s possible, I get sick of the sound of my own name. Agie doesn’t remember it often, but seems to manage quite ably on the days when we are alone. I wouldn’t mind so much if it wasn’t every five minutes and usually when I am in the middle of something. She doesn’t seem  to understand the phrase ‘in a minute’ even though I used it plenty when I was younger. Then, it was as a ploy to get out of doing something, these days it’s genuinely because I need to finish something. Neither she nor Bert seem to realise that I have things of my own to do and that I am not at their beck and call.

I don’t know if it’s me, or what’s changed, but I have found the last couple of weeks really difficult. One of the days last week,  Agie could not decide whether to slam doors or smash her cup as she told me that she hated me and hoped that I’d remember that. I just started to cry, it had been a week of fights and I was literally at the end of my tether. I messaged my friend and he told me that I need to remember I am essentially two people, I am a daughter and I am also a carer, he said she is railing against the latter. He was right and his words calmed me down and stemmed the flow of tears. Sometimes it takes someone on the outside who is able to think rationally to show you the way. Sometimes you just need a hug, even if it is in the guise of words.

I worry about the future. I can’t help it. I want my life back, and even though I understand that for the most part this probably is my life, I deserve some free time do I not? I’ve been chatting to someone I like and I think, how will this work, will I have any time. I’ll make time, I think he’s worth it, he probably thinks I am a fuckwit, but that’s life. There is no doubt I am a little skewed in the head, there is just to much trying to go through it.

I still and probably always will be my own worst enemy. I’ve talked too much today. I think I’ve worn him out, and I am not going to say anymore lest I cause him to disappear.

The safest option is to just go to bed and hide under the duvet.

The comments of others

Sometimes the person

You know it’s all well and good for me to feel or say my life is over, but when someone else says it, well that’s like a punch in the gut.

For those commenting, whether it be family or friends, I guess the reality is that they are in a no win situation. If they say that I still have a life to live and should get out there and get on with it, I ask them how they think that is possible, who is going to do everything that needs done. If they tell me that it looks like I am a carer now and that things are going to be more difficult, I rage and think, why should my life be over, I’m still young, I am as entitled as everyone else to live a life.

The reason for this post is, I am a single girl. I’ve had relationships in the past and they just didn’t work out, for one reason or another. I’d be the first to admit I am lonely, there are nights when I would love nothing more than to curl up on a sofa beside someone, have them hug me and tell me everything is going to be alright, even though we both know that is not true.

I’m torn when it comes to the subject of relationships, because whilst I would like to have that interaction with someone, I feel in my heart that it would be selfish to bring someone else into this situation that has more bad days than good. I know people say that if someone loves you they will take the good with the bad, but essentially, it is like asking someone to walk unarmed into a battlefield. I suppose though, that no matter how brave the face I wear, I still hold hope that I will find someone, even just for companionship.

The other night my friend said to me when realising I was texting a guy (who is just a friend), that he believed I couldn’t have a relationship with someone. I asked him why not and he explained that with my home situation it wouldn’t be right to involve someone else. Whilst there is a slight chance he is right, hearing him say it erased every shred of hope. So not only do I have to give up my free time, I now have to give up any chance I had of finding a significant other.

Here’s the thing, carer’s look after the mental state of the person they care for, but who looks after us……….

Feeling Overwhelmed!

I never wanted this to be a place where I came to write solely about Dementia.  I wanted this to be a place where I wrote about everything that doesn’t fit on my other outlets. There are so many more things in the world to drag me down, but still I find myself writing about Aggie and her version of Alzheimers. Perhaps that is because in the grand scheme of my life, that is the thing that weighs upon me the heaviest.

While most people go shopping or lunching with their friends, I’ve spent the day avoiding arguments and stuck up to my elbows cleaning toilets and doing household chores, before making everyone’s tea and then tidying up all over again, ain’t life grand.

We had a visit from the Dementia Care Team, who my poor deluded Sister thought were going to come in and make my life amazingly better, despite me telling her not to be so ridiculous. But what does she care anyway, she’s currently on a weeks holiday in the Sun, nice eh, I’d love one of those. As I predicted there is nothing they can do for dear old Aggie at present. They should however have given Bert (her husband) a Valium or two, because in answering the questions he inadvertently pissed her off, he is still to this day not sure of what he said, and she didn’t speak to him for about a week! You’d think it would be a blessing in disguise right? but not so, the atmosphere was fucking horrendous.

Everything is a fight, and I know I should sometimes be more forgiving and tolerant, but I’m tired, I have the onset of old lady hormones and I’m just plain flat out fucking fed up of it all.

Tablets are the newest battle. If I need to give a gentle reminder and tell her she needs to take her tablets, you would think I had asked her to eat her dinner whilst standing on her head. Here’s the thing, I couldn’t care less if she takes them because she is her own person and I cannot force them down her throat,   but I’m damn sure that no one is going to come and tell me she was neglected and I never tried, because that is just not the case. As much as I rant and rave, I want to her to have as long a life in this world as I can.

Today was particularly volatile, she threw something at me, but that’s the first in a long time. It’s funny but I think since they gave her the pills that are ‘allegedly’ meant to help her, she has been worse. Her mood swings certainly have been anyway.

Bert wondered if perhaps with the Care Team coming she thought she was going to be put in a home. I reminded Bert that if things ever progress drastically then that’s what we will have to do, but for now it’s not an option. Little does she realise that this team are the people who will work to try and keep her at home, but if she is skipping tablets and won’t let anyone assist then I am going to have to say something to someone.

Mentally it’s draining and physically it’s draining too and when I have to be cruel to be kind, my stomach is in knots. The the thing is when Aggie is in a good mood everything runs quite smoothly, but when she is not, the whole world knows about it, Dementia it would appear has robbed her of her facial filters and some of her vocal ones too.

….and people tell me not to worry about the future….yeah…ummm….thanks and fuck off!

Zipped up

I didn’t speak when I came home tonight. I couldn’t, I was afraid that if I opened my mouth I would scream and not stop. So I made the dinner in silence, washed the dishes in silence, prepared tomorrow nights dinner in silence and when everything was done, slipped back into the shadows of my haven upstairs.

I used to enjoy cooking, it gave me pleasure to try new recipes using ingredients I couldn’t even pronounce the name of. Now though, that I have to do it every day, cooking has become a chore. Everything has become a chore, because it feels like my life is slowly but surely being taken away from me, one day at a time.

I’m so tired, I just want to put my head in my hands and weep about the injustice of it all and the way my life has turned out. Fuck feeling guilty. Do my other family members feel guilty when they only come to visit once a month. ‘Oh we must do this’ or ‘Oh we must do that’, stop talking about it, make arrangements so I can have at least one day of not having to worry about anyone but myself.

Such simple things lead to strong emotions, perhaps tomorrow someone will empty the dishwasher.

Can you hear me?

While commenting to someone tonight, I used the phrase ‘A blank page is a good listener’. I’m sure someone somewhere has said it before, but I like it and it’s also true.

It’s hard finding people who want to listen to the complexities of everyday life. People have problems of their own and interest wanes. To be polite they will ask how things are, but generally as a rule, they do not actually care and once you start to talk you can see their eyes glaze over and their minds wander to somewhere that is clearly miles from where they actually are.

I tend not to talk about life that I lead now. Sometimes I want to, some times I need to, but regardless of how I feel I usually answer with a stock ‘It’s getting worse’ when anyone inquires after Aggies wellbeing.

I don’t get the stigma attached to having dementia, it’s more rife than we know. Since Aggie started on this journey people from all areas of my life have on further discussion said, oh my Mum has that, my Dad has that, my Gran has that. Really!? it wasn’t something you thought you should mention, what the fuck!

I tell everyone my situation, I’d rather they know the reason why I am banging my head off brick walls on bad days.

Express Yourself

There are many times when I have sat down to write and that is where my interaction with the blog finishes.

Guilt starts to gnaw at me,  and battles with the demons inside my head who wish to escape. Usually guilt wins, and I continue on without letting out the thoughts that haunt me.

It’s good to talk and it’s good to listen. Coming here and setting a few things free has been good for my soul. The simple addition of comments from other people who are on the same kind of journey, has made all the difference. It’s nice to know I am not alone, and I have felt alone for a while now.

When you become a carer it takes over you life. Essentially it feels like you exist in a bubble, because all your time is split between work and home and keeping things on an even keel. Sounds so simple doesn’t it when you say it like that, but the reality is very different. One wrong move or a simple word said out of place can upset the apple cart, and send it crashing around your feet, while you stand in a daze wondering what just happened.

I feel guilty because some days I cannot cope. I feel guilty because I need to write about the bad days. I feel guilty because one day Aggie may read my words, when this is all over and feel like I have betrayed her, even though that is not my intention.

I need this blog to try and keep my own mind healthy. I need somewhere to let the bad stuff spill onto a page so I can try to make sense of it all and put it into perspective.

What would be the point of me writing all hearts and flowers, because my life is not like that. My honestly means I will have to document things that are painful and perhaps unkind, but it is better out than in where it would have the chance to fester and grow, making life unbearable for all concerned.