Jane’s Story – Part of the Ordinary People with Extraordinary Lives Series.

Did you know that this is National Carer’s Week? I’m so pleased that there is such a week, as it gives us all a chance to honour those dedicated and selfless people who care for loved ones tirelessly every day.

I did some data research about Carers in Ireland and will share some facts throughout the article that may surprise and shock you. (Data provided by http://www.carersweek.ie)

Did you know?

6,287,510 hours of care provided each week

33.6 hours – average care-giving hours per carer per week

At least 21% of carers provide 57 or more hours of care per week

Incredibly long hours for a lot of people in what is an extremely stressful role.  I thought that it was extremely appropriate that I highlight one such carer who has worked incredibly long hours for years and show the world exactly why they have 100% earned their place in my Extraordinary Lives Series.

First of all, who is a carer?

The most recent Census of Population defines a ‘carer’ as someone who:

provides regular, unpaid personal help for a friend or family member with a long-term illness, health problem or disability (including problems which are due to old age). Personal help includes help with basic tasks such as feeding and dressing.

Let’s talk numbers for a minute.

15,175 is the number of people who

give ‘24/7’ care

making a total of 2,549,400 care hours every week

And while I’d like this interview to honour ALL carers in Ireland, I’m very proud to introduce you to just one – the charming and lovely Jane Ferrie.

Jane, first of all thank you so much for taking time out of your busy schedule to talk to me today.  Can you tell me a little bit about yourself and your family?

I am a 48 year old single Mum to my son Omar aged 7 and live in Dublin. I was born in England but Mum and Dad moved the family ( my older sister , brother and me) to Ireland in 1968, where we all still live.

I have worked since the age of 18 and spent 14 years working away from home firstly in London and then further afield in Tunisia , Greece, Spain , France and India where I worked for various tour operators. I returned home to Ireland in 1999 to put down some ‘roots’. The initial plan was to move back in with Mum and Dad on a temporary basis but this soon became a long term arrangement which worked well for all of us , Mum at the time was still fairly mobile but was finding a lot of her day to day ‘chores’ more difficult so I found myself helping out a little more each year.

I was fortunate to secure employment more or less as soon as I returned home , and for 7 years I worked as a HR Manager , before moving into Recruitment for a couple of years and then more recently I ran my own very successful direct sales business for the last 4 years.

My life has always been busy and pretty ‘full on’ , especially since 2006 with my sons arrival and the death of my Father , leaving me with a 6 month old baby and a then 79 year old infirm Mother who increasingly depended on me for help.

mum 2

Jane pictured with her son Omar and Ruby, her Mum.

Isn’t it funny how fate has a plan mapped out for us Jane? Your Mum and extended family must be very glad that you decided to put down those roots in Ireland back in 1999.  I’d love to know a little bit about your Mum, can you tell me about her?

My Mum Ruby , was born in July 1928 and will be celebrating her 85th Birthday next month.

She was always a very active , house proud Mother , a great baker , knitter, great at DIY especially painting , basically a fantastic homemaker. She is a strong woman (no longer physically ) but mentally she is and always has been razor sharp.

My Dad was a horse trainer and he spent a lot of time away from home so it was up to Mum to hold everything together. Mum has both osteo and rheumatoid arthritis which on their own can be extremely painful and debilitating but together are a recipe for disaster. It manifested itself in her late 50’s / early 60’s when her joints became sore and inflamed and she would suffer regular ‘flare ups’ meaning any part of her body could be attacked which would affect her ability to perform what would be considered be to be normal day to day activities. But she always battled on.

There is no cure for Mums condition, it is a degenerative disease and slowly over time we noticed a deterioration. So much so that in 2000 we had to convert the garage into a downstairs bedroom / bathroom for Mum as she could no longer climb the stairs. Next Mum found it almost impossible to walk even with her frame and she is now confined to a wheelchair. Because of this she now also suffers with circulation problems and her last hospital stay in February was for this reason.

Since 2006 Mum has been more or less bedbound as this is where she is most comfortable. She is in constant pain and takes a variety of daily meds and also uses morphine patches.

Ruby is an amazing woman Jane and it must have been so difficult for her and for your family to watch her deterioration over the years.  Statistics show us that over 1/3 of carers in Ireland also hold down full time jobs.  And I know for years that you were one of them.  Tell me about your transition to full time carer for Ruby.

I suppose you could say that I have been caring for my Mum on an ever increasing basis since 2001 but it was 2006 after my Dad passed away that she became more reliant on me. She had major life saving surgery that year which requited a long recuperation period. I was still working and also had a young baby , so it meant being extremely organised like ensuring Mum had a big enough flask of coffee beside her bed before I went to work and that her lunch was prepared and left in the fridge for the home help to give her when she came for her daily 30 mins arranged by the HSE.

While at work I continually worried about her getting in and out of bed on her own . I had a very understanding employer who aware of my responsibilities would let me run home if Mum was in difficulty or particularly unwell. However it was becoming increasingly difficult to juggle my work/ son / mothers care so in 2008 I decided to become self employed and work from home – at least I would be on hand for any emergencies !

This worked well for a few years but once again as Mum’s condition continued to deteriorate even working from home was not an option, I was so stressed from trying to manage my competing demands that after her most recent hospital stay in February this year , I decided to close my business and become Mum’s full time official carer. So I set about applying for Carers allowance which took about 9 weeks (which I believe is good going !) to be approved and paid, this obviously involved form filling , Doctors reports , a diary kept by me etc.

My role hasn’t changed in so far as I still do everything I did as an ‘unofficial’ carer but the added stress of trying to run a business has been eliminated. I have more time for Mum and she is no longer worried about me trying to do too much.

The downside of course is that financially I have taken a huge hit , full time carers allowance is currently €204 per week plus an annual respite care allowance of €1375 ( reduced from €1700 in the last budget). It is far from ideal but between the allowance and Mums pension we manage, it is a case of having to. The only other option is for Mum to go into care which is not something we as a family wish for.

I think a lot of people will be shocked to learn that the carers allowance is so small Jane.  I know that you and Ruby and the rest of your family have decided that going into care is not an option, but do you get any support at home from the HSE? My research shows that only 3.5% of people aged over 50 were found to receive state-provided home help services.  A sobering statistic.

The HSE provide a lady who calls twice a week to shower my Mum which is a great help and the Nurse from the local health centre calls regularly to monitor Mum’s blood pressure and circulation so I don’t feel entirely abandoned or alone. My sister in law Maria is also a huge support and she looks after Mum whenever I need a break. I realise how lucky I am in this respect as many family carers do not have this support.

Jane, I’ve asked all of my interviewees this question and I’m really interested to hear your response.  If you could stand in front of Enda Kenny and ask him a question, what would it be?

Enda Kenny – don’t get me started !! If I could stand in front of him I would ask him why he chose to cut the Carers respite grant from €1700 to €1350 ?

The majority of carers do not use this grant for ‘respite’ but to help with day to day living expenses like putting petrol in the car to take the person you are caring for to hospital or to pay household bills.

Ninety per cent of care in the community is performed by family carers. Why does he and his Government undervalue the work of carers so much ? The work carers do is extremely valuable , how would the Government provide care for those requiring it if family carers were unwilling to do so? How much of a financial burden would that be on the state ?

Well said Jane, I really do not know how you and others manage.  But equally frightening is the statistic that approximately 274,000 people aged 15 and over provide unpaid informal care.  It’s hard enough emotionally for carers to cope with the declining health of a loved one, without having the financial burden too.

And understandably 38% of carers who look after someone in the same household report feeling completely overwhelmed by their caring responsibilities, so Jane, can I ask you a tough question please? What is the hardest part about being Ruby’s carer?

I guess the hardest thing about being a carer is the isolation, if it wasn’t for the chats I have with the other Mothers at the school gates I could go for days without talking to anyone apart from Mum.

When you have always worked as I have , the contact with other people is sorely missed. I know how incredibly lucky I am caring for someone who has their full mental faculties , I feel so sorry for other people caring for elderly family with dementia or Alzheimers or indeed younger people with special needs.

I suppose no matter what the disability it brings its own unique set of problems but I feel blessed that I can still have a conversation about anything with my Mum.

I also get frustrated some people overlooking the importance of my role … referring to me as ‘unemployed’ or ‘not working’ or asking when I am going to start applying for jobs. I do work ! I work as as a cook, cleaner , secretary and nurse all rolled into one

Hopefully Jane, people will read this and share with their friends and through stories like yours, we can all learn a bit more about what is actually involved in your role.  And through this learning, we can hopefully understand and support you and other carers more.  I know that you wear so many different hats every day as a Carer, but it is also obvious how much you love Ruby and how close you both are.  That must sustain you.

The most rewarding part of my job is undoubtedly spending time with my Mum in her twilight years and being able to help her to maintain her independence and dignity, safe in the knowledge that this is what she wants – to be cared for at home. I feel very lucky to still have my Mum.

I am quite emotional reading that Jane, it’s an incredible gift that you have given your mother and I am sure everyone reading this will agree, that while you are very lucky to have Ruby, equally, Ruby is very lucky to have a daughter like you.

You’ve had quite a journey since 1999 when you returned home to Ireland.  What have you learned over the years since you started to care for Ruby both informally and then as a full time Carer?

If I could give any advice to anyone else in my situation it would be try and make some time each week for yourself to do things you enjoy, if this involves asking for help then ask a family member or friend or indeed the Carers association.

A cup of coffee with a friend , a walk to the park , a trip to the gym , whatever it is, it is important to have some ‘me’ time, depending on your circumstances this could be 30 mins each day or an hour once a week, but grab it and make the most of it – don’t forget you need to alleviate the stress for the sake of your own health and wellbeing and to give you the energy to carry on caring.

Jane you have been incredibly open and honest and I know that so many people reading this will be both moved and also informed by everything you have shared.  Can you do one more thing for me?  Just imagine you got the chance to talk to yourself back in 1999 before you began caring for Ruby, what would you say?

If I could go back in time to when I started caring for my Mother what would I say to myself ?

I would tell myself that it will be tiring, frustrating and isolating at times but not to doubt that I have the experience or qualities to handle her care.

When you become a ‘carer ‘ the whole relationship you have with that person changes. You move into another place and this can take time to settle while both parties get used to the changes. But it inevitably brings you closer together which is what makes it all worthwhile.

Jane, thank you so much for this interview.  I wish only the best for the future for you and your family.

I began this article by giving the official definition of a Carer.

But I’d like to redefine that if I may.

Who is a Carer?

A Carer is a loving spouse, parent, child, sibling, friend, nurse or volunteer.

A Carer is a Warrior doing battle for their charge.

A Carer holds strength, courage and fortitude in abundance.

A Carer is love.

A Carer is Extraordinary.

Thank you to all the Carers in Ireland.  We salute you.

Carmel x

To read more the Ordinary People with Extraordinary Series, click here:-

http://carmelharrington.com/category/ordinary-people-with-extraordinary-lives/

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