Wednesday, 10 October 2018

Stepping Out Challenge - Day 10 - Carers Story Continued

Welcome to today's post, I am taking part in a 31 day blog challenge where I post everyday in October.  I love creating challenges for myself and joining ones by others.  My challenge for the rest of the month is to reflect on some of the series I created for myself and inspiration that I have taken away.

Listen to the Podcast

Today I am going to be continuing with the A - Z of Dementia - a Carers Story

Thank you so much for joining me again.  As I started to share my story I began to think about all the negative emotions I felt around the dementia.  I wanted to relate to mum as her child her daughter and not her carer.

I felt lost - I didn't know what I should be doing every step of the way, some days I made it up, some I played it by ear or just shut down and moved on automatic.  I felt angry - why us, we had lost our father from an unknown illness, the doctor we had should have been disbarred for his handling of Dad's illness and every time I saw him (cause mum didn't want to change - a loyalty to authority that her generation had) I wanted to give him a slap for his condescending attitude.

As my father slipped away, my brother turned to me and said that we had to be strong for mum.  The tears that were beginning to stream down my face did an about turn, part of me couldn't compute, I put away the voice that said 'who is going to be strong for me and mentally began to construct a strategy of care that when mum was in the throws of Dementia came into action.  I thus went into stealth mode and became organised and planned and took responsibility and created schedules for us as a family.

I didn't think about myself, I was on lock down I shut out my emotions to stop the floodgates from opening as if they did I couldn't be effective.  I compartmentalized my emotions and tapped into them only when caught off guard - such as someone asking how I was.

Over time I built a fortress around my emotions and you needed special clearance to cross the moat which guarded how I felt.  I became practical and rather than thinking about how I felt, I started to consider how mum might have felt.  If I felt scared, how must mum feel?

I felt frustration and fear - we have all felt these, but what if your frustrations are dismissed, and you were told to sit down and the more you tried to explain yourself the more frustrated you got cause they weren't listening to you, they didn't and wouldn't understand, they ignore you, shout at you.  In my work with people living with dementia, I have seen this happen first hand.

How would you feel if it were you?  I began to look at all the emotions I felt around the dementia and the feeling of powerlessness and tried to understand how my mum and others might feel.  Mum was able to cloak the memory loss for some time especially to the health professionals which often made us look like we were the ones who had memory issues.  She worked hard to enjoy the life she was living and she became the life and soul of not only the party but where ever she went she brought laughter and an appreciation for life and she brought me along for the ride - she called herself the dancing queen.  I laughed, cried, came out of my own comfort zone, accepted she was willing to live her life and found a way to make sense of mine.

Yes, it is good to share, to understand to realize we are but here for a moment.  I don't mourn for the loss of who mum once was, she is still living and breathing and wanting to make the most of her life.  We have to think about what it is we call quality of life for ourselves and spend time enjoying it with our loved ones, we need to have patience.

In our fast paced lives, we have to think about what really matters to us, we are all getting older and have to think about the kind of life we want to lead, how we treat each other and how we want to be treated.

You an check out some more of the posts I wrote HERE and if you have any questions please do not hesitate to leave them.  I am so glad you were able to join me today.

If you are interested in the Arts and Health activities you can join my  Arts in Health Network where I curate Arts and Health activities happening around the world, you can also share what you are doing as well.

Tomorrow I will be going further into the Tips for Carers challenge with some practical things that you can do.  I hope during this month you find some time to get out of your comfort zone and challenge, be creative and stretch yourself.

    Why not join me each day for the rest of October as we dive into to some exciting challenges and look at ways in which they can impact on your own life. 

    I look forward to seeing you tomorrow, it is never too late to start! The main thing is to take one step at a time and do something that you find interesting.

    Stay blessed and be a blessing.

    Ps: some resources that you can check out


    1. Usually, I never comment on blogs but your article is so convincing that I never stop myself to say something about it. You’re doing a great job Man. Best article I have ever read

      Keep it up!

      1. Jagbir, thank you for stopping by and reading the post. Have a great week.


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