Carers week 2023

My youngest daughter, Rachel, had a heart attack whilst in final stages of labour in 2012. Outcome of that catastrophic event was a healthy baby girl but left Rachel with a hypoxic brain injury. Despite 11 months in a specialised rehab unit, Rachel came home in June 2013, unable to sit unaided, no weight bearing, soft food diet, risk of choking and unable to speak or use any communication aids – needing 24/7/365 care.

I gave up a high profile, highly paid job to care full time, unpaid for Rachel and her baby daughter.

In the beginning, not knowing what support is around or where to access help was hard. Modifying my lovely home to provide essential access, comfort and to ease care provision was hard. Having paid carers coming into my home to provide care and support to help Rachel was hard. Days and nights were hard.

My life is hard – the emotional rollercoaster of wanting the life that should have been for Rachel as a young, healthy, trendy mum to a beautiful growing-too-fast little girl, also missing the lifestyle I was fortunate to have in a professional career balanced with the 24/7/365 demands of a carer/nanny/parent.

Financially, I have exhausted almost all my savings just to provide a standard lifestyle for us – managing on carers allowance, my private pension and Rachels benefits. I am angry with the powers that be – decision makers (ministers/ Local Authority) & influencers (media!!) – who constantly paint a picture of unpaid carers being hero’s or scroungers. I am neither, I do what I do out of love and a drive to give us the best life we can within our constraints. I am unable to work because I care for Rachel 24/7/365 and actually save the public purse far more money than we take out, and Rachel and I both put in lots of money into the system before we were in this position – so frustrating not having that recognition!!

I am proud of how far Rachel has progressed – she can walk around the house with guidance, and outside with support and eats everything she likes, is verbal with prompts and communicates her needs – generally seems to enjoy her life. She has a great relationship with her little girl as a mum, albeit limited. So although life is very hard, we have a decent life – not what we planned or wanted, but it is our life!!

My First Post

For years I have managed to keep a diary as a means of recording key events in my turbulent life and have been advised to write a book by many friends, colleagues and family members. My response has always been – where do I start, what will I focus on and how do I find the time? More so now following the effects of a catastrophic event that hit us in July 2012 (View http://www.rachelharry.co.uk for details) I think I am now ready to utilise social media, drawing on my coaching and mentoring skills to share samples of my crazy daily activities in a positive, helpful way.

In my last place of paid employment, I was able to offer professional mentoring and executive coaching to help others either address a difficult issue or reach their potential – every element of my professional job roles have been linked to helping others. Therefore, I hope to use my blog to kind of help others in a remote and distant way by sharing snippets from my experiences to generate interest, debate or just help others in similar positions benefit in some way from my experiences and lessons learned. For example, I regularly draw on many sayings and fables to describe what may be happening and I will use some in my blog in the hope of inspiring others. One of my current mantra’s is – SHITE HAPPENS, GET OVER IT AND GET ON WITH LIVING!!

Here we go,this first blog is just setting the scene……….

Bit of background
My childhood
I am a 60’s baby (well, born in January 1959 but my life experiences are of the 60’s!) We lived with my maternal grandfather, a pit worker, in a miners terraced house, with an outside toilet and my parents lived life to the full, spent what they earned and gave my brother and I a rich life. Well, rich for those times, we were one of the first in our village to have a colour TV, my dad had his own car and held a skilled manual job, my mum worked in various factories and shops during school hours and I helped her to ‘keep house’ (that meant shopping, cooking, cleaning washing & ironing around her working week with increasing demands from me during school holidays) Plus mum was noted for dramatically changing her hair colour on a monthly basis, which I believed was what most people of her age did until I went to grammar school! We were close to aunties, uncles and cousins and had regular family gatherings and annual holidays, we were one of the few families to holiday in Spain. My childhood gave me lots of fun, lots of jobs and lots of arguments within a protective bubble of endless love that built firm foundation for my personal beliefs in family values, work ethic and a drive for enrichment..

2. My Education
I had a massive ego boost aged 11 when I was one of the minority in our village to go to Grammar school – I passed the 11plus!! (that was a national test in what is now year 11, that determined whether pupils went to comprehensive (GSCE) or grammar school (O’levels). Grammar school taught me embarrassment (what colour is your mums hair this month? what do you mean you don’t have an inside toilet?) wealth (the richer girls had more expensive essentials – clarks shoes, M&S uniforms and school trips such as skiing in France or cruising on the Med, all way out of my mum’s budget) friendship (being financially rich does not make a person characteristically rich – I learnt that the meaning of true friendship is being there for each other no matter what gets in the way). I left school as a tough 16 year old, proud of gaining 5 O’levels and a passion to earn my own money, a dream to marry a prince and live happily ever after. Fairytale outlook that was to drive me to succeed and frequently test my personal beliefs.

3. I married in 1977, aged just 18, three of my friends married the same year so I was normal in my circle! I wasn’t pregnant but I was on the pill. I had a big white wedding, honeymooned in Ibiza and we bought our terraced house in the neighbouring village – we were the first in both our families to have a mortgage!!! I ultimately gave birth to two healthy, beautiful baby girls, the first in 1979 and the second in 1981. We struggled together through the rough times (miscarriage, redundancy and 15% interest rates) and made the most of the good times (redundancy pay-offs, holidays, new jobs and new houses) We both pursued professional careers to maximise earning potential and gain senior positions. We took advantage of booms in house prices and felt we had reached the stars when we bought a new build detached house in 1989. We had lots of good times and some really bad times. I left my marriage in 1999 in pain, in debt and out of love. What happened to those strong family values?

In summary, I had a stable and relatively happy childhood and apart from marrying a prince I achieved what I set out to do. I have had frequent dramatic episodes in my life, yet none of them match up to what happened to lead me to the position I am in today – Semi retired HRD specialist, full time carer and nanny with strong family values.
In terms of lessons learned, I accept that we cannot control every aspect of every part of our life, only how we react to it. I am thankful for what I have – active parents, two fabulous daughters, three gorgeous grandchildren, a loving partner (well, fiancé but that’s another chapter), a talented nephson, and many supportive friends and family members. Most of the time I am happy – isn’t that better than it being happy some of the time or even better than being unhappy most of the time? ENJOY THE GOOD TIMES AND GET THROUGH THE BAD TIMES BECAUSE NOTHING LASTS FOREVER.
Sooooooo my question from my first blog is connected to my current mantra:
WHEN SHITE HAPPENS, WHAT IS IT THAT GETS US THROUGH IT OR ENABLES US TO GET ON WITH IT?