Becoming a Carer

Becoming a carer was never ever factored into my plans for retirement. I became a carer by default like many others.

As I write this article its Carers Week in the UK June 8-14 2015 which will raise awareness of how many people it affects and hopefully promote some of the resources and support there is available.

In the UK it is reported that one in eight adults - or more than 6.5 million people are carers, often struggling to keep their heads above water. Many are trying to combine working and being a family carer at the same time.

How I became a Carer

My parents were happy living a relatively active life enjoying their retirement and it never entered my head that I would end up caring for them.  Which of course I now know was very unrealistic.

As a family we had touched on the subject a few times when my parents were relaying information about one of their peers needing to go into care.  They both said they would trust my sister and I to make the right decisions at the right time.

We conveniently pushed it to the back of our minds never thinking the day would ever come that we would have to take responsibility for becoming a carer to either of them. 

The day life changed

My world suddenly fell apart in February 2002 when my father unexpectedly died after a short illness leaving my mother
heart broken by her grief.  They had always had a loving close relationship married for 57 years.

If we ever stopped to think which one of them would go first we would have said my Mother who had suffered with heart problems over the years. 

A few days before he died my Father looked at me from his hospital bed and called me to his side.  He then whispered in my ear “ love I’m sorry I’ve ruined the rest of your life” I knew immediately what he was saying to me.  I smiled, squeezed his hand and promised to take care of  Mum, he knew he wasn’t going to get better and that she would need a great deal of support.

So there I was suddenly responsible for my Mum.  My sister lived in Greece so she was unable to help in practical terms.   Fortunately  my parents had recently relocated to live nearer to me but it seemed ironic that just as we were looking forward to spending more time together Dad was taken from us.

I’ve often wondered whether he knew his health was failing when he made the decision that they would move closer.  It certainly made things easier with Mum living in the next village to us.
 
It could have been more difficult if they had remained where they were 120 miles away.  How hard could it be?   Mum had always been very independent and I felt that once she got over the initial grief of losing my father she would join in community activities and make friends.  Even then any thoughts of becoming a carer for my Mum never entered my mind.

Those first few months after Dad died were awful.  Mum was consumed with grief and simply kept telling us that she wanted to die.  It was difficult to get her interested in anything and many days she just sat staring out of the window. 

Coping with bereavement naturally leads to mood swings and depression as the person left behind comes to terms with the reality of losing a loved one so it took some time to realise something else was wrong.

It was probably about 18 months before I suspected Mum’s grief was something more.  After raising my concerns with the family Doctor we were referred to the Memory Clinic where a diagnosis of Alzheimer’s was given.

Although I’d heard of it I didn’t actually know what the symptoms were other than a failing memory.  I quickly learned that Alzheimer’s strips people of their faculties, their dignity and quality of life little by little and and that at some stage in the not too distant future I would face becoming a carer for her.

Unfortunately in the early stages it is difficult to recognise and many symptoms are accepted as part of growing old. Only 40% of people with dementia will receive a diagnosis.  That means 60% of people suffering with Alzheimer’s Dementia are never diagnosed.

The sad thing is that if treatment is given in the early stages it can delay the onset of worsening symptoms.  In other words it can buy you time to carry on enjoying your life a little longer.

I knew very little about the disease but understood that it would only get worse and there was no cure.   None of us knew how long the journey would be before the final goodbye but it slowly dawned on me that we were in it together until the bitter end and there was no escape.

Becoming a carer is hard


There were many times at that point that I wished it was me that lived abroad rather than my sister.  I didn’t know how I would cope with looking after Mum and continuing with my work.

I was a self-employed as a Human Resources Consultant and my work could take me anywhere in the UK and was rarely on
my doorstep.   I didn’t have a husband to support me although I had my daughter.

There were many times when I was miles away on an assignment and I got the call that she had suffered some kind of emergency and I had to try to get people to cover for me so that I could get back home.  Sometimes it was impossible and I had to call my daughter who had to leave her work to go and assist.

As Mum deteriorated and needed more and more assistance I found myself increasingly having to turn work down. By the time she died I had been forced into an early retirement because I needed to claim my pension much earlier than planned simply because I wasn't earning enough money to survive on.  The long term effect for me has been a much reduced pension for the rest of my life.
  
Becoming a Carer can be tremendous drain on your finances.  With regular hospital visits, doctors, clinics and various other  appointments there is a huge increase in travel costs for both the patient and the carer.

Hospital car parking fees are extortionate and quickly rack up.  Then there are the added expenses of extra laundry, essential
telephone calls, and special meals, which all help to drive living expenses up just as your income is falling with either less or no work at all.

Are You Caring for Someone?  Click here to Share Your Story


The isolation of being a carer

The worst part of becoming a carer for me was the feeling of being completely alone with little or no information as to what to expect.  I had no idea what resources were available to me or who to turn to for help.

I embarked on a 6 year journey which proved to be very difficult.   If I had known at the beginning of that journey what I knew by the end it could have been a much easier experience for both Mum and me.

If the statistics are correct there will be many babyboomer carers who will be faced with similar problems  becoming a carer for an aging parent or sick partner.

Accessing Support

Thankfully 8 years on accessing support is a little easier.  Your family Doctor should have information brochures available depending on the illness your loved one is suffering from.

Your loacl Social Services department should be able to supply you with information.

The internet is a wonderful source of information wherever you are in the world.  Type a query into a search engine and it will bring up local support services you can access.  You can even access
support groups via Facebook and Twitter.

When you have a really bad day remember nothing lasts forever, your journey of becoming a carer will end one day with
the knowledge that you did your best for those you loved.

For more information Age UK and Encore has lots of information and support for Carers.


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