Anger floods me, it steals my breath and breaks my heart all in one foul swoop. Angry about so many things, the world, martha’s illness, martha, situations with friends, for friends, family, everything. I feel suffocated by the world, by it’s problems, and yet life feels good. Business ventures, relationships, lifestyle, it all feels good, this is when the guilt sets in. Because I shouldn’t be angry, look at everything I have. In this moment I know I am about to spin out and in my head I imagine a master of ceremonies, vintage dress, a maroon velvet ensemble, and with his megaphone he yells “let the games begin.”
Tonight I stood in front of martha yelling at her for not telling me that she needed to go to the bathroom, I yelled about how this was the third time today, how I didn’t want this, I repeated over and over that I.DID.NOT.WANT.THIS. She looks at me vacantly, I have no idea if she understands the words that are pouring from my mouth, if she hears what I says but I worry that her own shortness of breath is fear.
I stand in front of her and tug at her clothes for her to undress, frustrated I hurry her and she complies. Internally I battle guilt and anger, they both make appearances;
When anger hits I become breathless, rigid, stern and possibly frightening, when guilt swoops in I become teary, remorseful, agitated, I want to break down, I want to throw the mother of all fits.
This all unfolds whilst I undress Martha for her fourth shower of the day. She is in the shower, I systematically wash her, command her, hand her things, shampoo her hair, rinse, turn off the shower. I hand her a towel and as I walk away from her to fetch clothes I yell ‘dry yourself’ when I return, she hasn’t. She is still standing, holding the towel in one hand while the rest of it soaks up the water in the bottom of the shower. Anger takes a hold again. I close my eyes and count, I manage three seconds and it reminds me of the last time I had ink to skin. Towards the end of my last tattoo I could only manage to count to three before starting again, that three was devoid of anger, but the three was for control. This felt the same. I was counting to three to gain control. I systematically dried her, efficient, devoid of affection, I commanded her through to her bedroom where I dressed her, her expression did not change. I closed my eyes again, one, two, three. Handing her clothes, instructing her what to do. We finish, guilt has taken over, I want to say sorry but the words are stuck. She gets awkwardly into bed, it looks uncomfortable, I feel the anger starting to rise, I force a few words from my mouth, I glare at her and she shifts into a more comfortable position. I can’t read her expression, it is the same one she has had all day, I can’t read her face and it infuriates me.
I leave her room, I pull the door shut behind me and breathe. I hadn’t realised I have been holding my breath the whole time. Anger and guilt are still thrashing it out, I try to calm my mind, I tell myself this always happens when respite is close, she is getting worse and you should be prepared for that. I flurry myself around the house, tidying, cleaning, putting things away. I take a valium to aid with the increased surge in adrenaline, another story starts to play out in my head, my frustration with a naturopath. I let it play on for a few minutes before closing it down. I slip myself into bed, frustrated, angry, guilty, sad, lonely, mournful and the only thing I can think to do is type. Attempt to find some peace. So I type, I share and I hope that someone will read this and say this happens to me too.
With Mothers Day just around the corner I want to honor all the amazing women out there, whether you have children or not you are a giver of life, amazing beautiful women of the world. So I have a little give away for y’all.. Tell me what it means to be a woman or tell me about an amazing woman in your life, in the comments or by private message and go in the draw to win this sweet prize! You can either have it for yourself or nominate a special woman you would like it sent to!
Much love, K x
Lately I have had a few conversations about my writing, most of it positive and it is so affirming to hear that people think I write well but also that my words offer an insight into the world of living with dementia. It is amazing when I can connect with people in the community because of the page and my writing.
But some of the conversations about my writing has been perplexing to say the least, I have written about this before.
Making yourself vulnerable is the strongest thing you can do. I don’t find it easy to ask for help, I put it down to my only child syndrome. I think a lot of people do; but in an ever changing world where you can be in contact 24/7 an easy way to communicate without directly asking for help is to post something. Write something. Show your emotions in some way that takes it away from directly having to ask for help. So when I write about the way that alzheimers impacts me it is my way of asking for help. It is also my way of relieving the pressure that is building up. I write about sad things, happy things, frustating things and the likes.
This makes me vulnerable, it makes me open to criticism, it makes me open to idolisation, it validates my own self worth and in the eyes of some it makes me appear weak. It makes me appear too emotional, too angry, bitter or unstable.
But don’t get it twisted. Being vulnerable is the strongest thing you can be. The power it takes to write out your emotions, share your emotions at any level is an amazing feat.
So to anyone who has ever felt as if sharing your emotions is a hard thing to do, it is, you might be viewed as weak or vulnerable. But know this, you are strong, you are amazing and you are perfect!
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,