Yesterday 28th Sept 2015

Today is the day that I have an appointment with my local MP – I wake up – the time is 6.45am.

I am feeling slightly anxious today and I am thinking about all the issues that I need to discuss with my local MP.

“Right”! I tell myself, “get focused and get organised, remain optimistic and keep motivated, don’t wilt and keep yourself going”.

I wake the children and I get their breakfast.

I check on my mum. She is still asleep.

I have a headache today.

The children leave for school. It is 8.05am

I am beginning a new routine today – when my children leave for school, I get a bottle of water and start my DVD – 50 minute ‘tummy crunchers’. I am hoping that I have enough time to complete the DVD and I am hoping that the exercise alongside the water will take my headache away.

The carer arrives at 9am – I have 4 minutes left of my DVD, I shout down the stairs and say that I will be a couple of minutes – I complete the DVD. I am feeling bad, I am holding the carer back.

The carer and I shower my mum and then we dress her. I have a shower and I get changed, whilst the carer gives my mum her breakfast and brushes her hair.

My head is still sore.

I brush my mum’s teeth.

My mum’s keyworker calls – she said that there is a problem, as the carer who comes in the morning needs to leave my house at 10am. We have a discussion about this and my mum’s keyworker said that there is a possibility of a private care firm coming to my house at 10.45am to help me get my mum into my car.

The carer and I take my mum to my car and sit her in the passenger seat. The carer leaves.

I call my mum’s keyworker and explain that the carer who was at my house this morning is going to look at further ways in which they could accommodate my mum in the morning. We also have a discussion around funding towards my car being adapted so that I can easily get my mum into my car.

It is now 10.45, I drive my mum to the day care centre – my head is still sore.

I arrive home at 11.30, my head is still sore, so I go and lie in my bed and close my eyes hoping that my headache will go away. I am not sure if I have slept or not but it is now 12.30 and I need to get up, as I have lots  to do, I need to tidy up and prepare for my meeting with my local MP.

I think about my mum………………..

She has paid into a system all her working life in the hope of securing her future.
She then becomes ill which leaves her extremely vulnerable.
She then becomes old.

and

Instead of my mum being secure and safe throughout her illness and her old age she has become an ineffective human that a system does not seem to care for her adequately..

I think of all the positive words that you see when you read legislation, policies and frameworks. Words that are used are dignity, respect, protecting the vulnerable and inclusion. Then I think about my mum and what part of these four aspects are relevant to her life?

Her vulnerability has left her bordering on living in extreme poverty.
Her vulnerability has left her bruised and degraded through what I see as inhumane treatment in a care home.
Her vulnerability is close to leaving her isolated from her community and isolated from living some form of ‘normal’ life.
Her vulnerability has taken away her dignity and her respect, especially when she is getting bundled and hustled into a car to go to a day care centre.

My mum is like a one year old, she is ‘just’ learning to walk, she is ‘just’ learning to speak and she is at the stage where she still needs nappies and where she needs her mother to feed her. The only difference is that my mum will not develop these skills, she will lose them.

My mum needs the same level of protection as is afforded to children.

My mum needs the same level of care as is afforded to children.

The average life span of a person with advanced Alzheimer’s is 10 years, my mum has had advanced Alzheimer’s for around 3 years now – I want my mum to relish her life in comfort until she can relish it no more – I want her time to be happy and stress free – not affected with negative changes and cutbacks.

As a carer I want to be embraced and protected and thought of as a person with an expert and professional knowledge of caring for someone with Alzheimer’s. I do not want to end up ill and unhealthy, because I am a carer – I am more than that. No training or education can give you the knowledge that I have on Alzheimer’s, legislation and policy, as I have had to embrace it and fight it and I have had to work with it and around it to meet both my mums basic needs and mine.

It is now 1.30pm and I need to leave – it is 2.30pm and I meet my local MP. I explain why I am there and outline my issues. The MP listens intently, takes notes and confirms with me what the issues are – the MP will get back to me.

I drive to the day care centre and I pick up my mum. Myself and the lady from the day care centre hustle and bustle my mum into my car. I am late and I need to rush as my children will be arriving home.

I arrive home, it is 4.15pm, my children are there and the private carer is waiting for me, to help me get my mum out of my car. I apologise to the carer for being late and I explain that I was meeting with the local MP. The carer is extremely understanding and wheels my mum into my house.

Time to begin dinner. We have dinner and now it is study time. I sit with my son and we being the process of study uuurgh! aaargh! painful!!!

The carer arrives at 6pm and we get my mum washed and we put her pj’s on. Back to study. I ask my daughter to make her gran a cup of tea.

Its 9pm. I ask my children to tidy their rooms, as I have had no time today. I ask my daughter to help me with her gran, we walk my mum through to her bedroom, we change her pad and put her to bed.

It is 9.30, I have a cup of tea and watch some TV.

It is 10.30pm time for bed.