Now Ye're Talking - to a Family Carer

Boards.ie: Niamh

National Carers Week takes place from 13th-19th June this year, and to help celebrate we will have two themed AMA’s over the next week.

National Carers Week is a week of activities and events to help celebrate the work that Family Carers do. Family Carers are usually family members who provide care and support in their own home to a person with a disability, frailties due to aging or who has a serious illness. Family Carers contribute nearly €4 BILLION worth of care to the country, but there are a lot of myths and misinformation out there about what Family Carers actually do. This is your chance to find out a little bit more and ask questions to help understand what life is like in Ireland for different Family Carers.

You can find more information about National Carers Week by checking out the website or the Facebook page.

This week's first AMA contributor is a Family Carer for her son. Ger regularly writes on her award-winning blog, It's Me Ethan about life with her eldest son who has been diagnosed with Hunter Syndrome.

Ger will be available to answer your questions until Wednesday. We'll then have another carer on from Thursday until Saturday to answer some more questions.

Thanks in advance

responsive

Hi, I'm a family carer and have been since my teens. For a long time I didn't know that I was considered a carer or pay attention to the strain it put on me. What would be your advice to people who find themselves caring for family unexpectedly and don't know how to assimilate the new role with their identity?
Thanks

I'm a Carer for my Son, AMA

responsive wrote: »

Hi, I'm a family carer and have been since my teens. For a long time I didn't know that I was considered a carer or pay attention to the strain it put on me. What would be your advice to people who find themselves caring for family unexpectedly and don't know how to assimilate the new role with their identity?
Thanks

Hey there ..personally that's a tricky one. Firstly you're not defined by the job you do. Caring is such a hard role to have especially since your teenage years. Being such a young carer it is important to ensure you get time with your friends and some down time . I always tell people I am me first...and I add that I am also a full time carer for my son because we are all more than carers . Being a carer is part of you and makes up a very important part of you but it isn't the only part of you. What do you want to do? You can get supports and respite. I don't know your full situation so can only comment on what you've said here.

Fries-With-That

I'm a Carer for my Son, AMA wrote: »

Thank you for taking the time to respond to questions from people about carers and the role they fulfil in Irish society.

A position that few people without experience of the role truly understand this includes successive governments.

I'm a Carer for my Son, AMA

thank you guys for following along! Very happy to be taking part in this and it's always good to know we are not the only ones , eh ?!

jordata

Hi Ger.
Thank you for taking the time to share your life story here. I have read your blog. Your most recent entry “Sunshine boy” broke my heart. My question relates to your blog about the new wheelchair. It is great that you got the chair that Ethan needs and it helps with getting around outside the house. My views on inconsiderate drivers and their parking habits I’ll leave for another day!!

What I wondered about Ger is if there are other pieces of equipment or technology that could make your family life easier?

miamee

Hi Ger!
I have a question about your own time. If you are a full-time carer in the home, do you ever get to switch off or have some personal; time? Does that only happen if you get respite care or are you able to have a small amount of time to yourself during the day? I'm sure it is a full-on job so you'd need down time - I'm just not sure how much down time carer's really get.

I'm a Carer for my Son, AMA

jordata wrote: »

Hi Ger.
Thank you for taking the time to share your life story here. I have read your blog. Your most recent entry “Sunshine boy” broke my heart. My question relates to your blog about the new wheelchair. It is great that you got the chair that Ethan needs and it helps with getting around outside the house. My views on inconsiderate drivers and their parking habits I’ll leave for another day!!

What I wondered about Ger is if there are other pieces of equipment or technology that could make your family life easier?

Firstly thank you for reading the blog and for taking the time to comment here ! Getting used to the wheelchair has been and is still a struggle if I'm honest but we'll get there ..we have to right?!
Yes there are a few bits I'd love for Ethan but due to waiting lists and financial constraints they can be difficult to get.
I am hoping to get him a feeding chair for example...think of a high chair but for an older child. Ethan loves lobes cartoons so anything like Netflix has been brilliant for him as there are no TV advertisements😉 I would love to get a sensory room or an imput from an OT for his bedroom but again funds tend to put a halt to my gallop...I have found eBay a great spot for buying sensory toys...
Again thank you so much for taking the time out of your day for an ol chat!
Ger

I'm a Carer for my Son, AMA

miamee wrote: »

Hi Ger!
I have a question about your own time. If you are a full-time carer in the home, do you ever get to switch off or have some personal; time? Does that only happen if you get respite care or are you able to have a small amount of time to yourself during the day? I'm sure it is a full-on job so you'd need down time - I'm just not sure how much down time carer's really get.

Thanks for following along! Sadly the only real downtime I do get is respite ...which is an absolute godsend for us and Ethan..he adores the staff and the house.
Every evening I suppose when all the boys are asleep is my time after I've done the usual meds prep and lunches uniforms like most parents! I normally am sitting by 10 and in bed by 11.30 depending on Ethan's sleeping habits . I write and I view that as my downtime .
Ethan and his brother J are at school until 3 so everyday I get a bit of me time too with a toddler D ! But with summer fast approaching that'll change 😂😂
I really do find that even an hour away is a huge help...without any child ! And I am lucky , I have a husband who knows this and does his best to give me time when we can, I do also have amazing friends so they make sure I get a bit of downtime too by popping in regularly to me !
I hope I've answered your question!
Ger

cyning

If you could pick one additional support to be put into place for carers what would it be?

I'm a Carer for my Son, AMA

cyning wrote: »

If you could pick one additional support to be put into place for carers what would it be?

Just one...that's hard. I suppose from my perspective I have always felt that there's not enough support for carers while they are caring but what happens after ...that's what keeps me awake . Ethan has a terminal illness and I have huge fears about what happens to us and to a point me after... there's no help...no support and no one seems to know or dare I say it care. It feels like our government think all carers are adult children caring for thier aging parents ...there's a whole group of carers trying to piece their lives together after the huge loss of a child ...
thank you so much for taking part
Ger

Boards.ie: Niamh

Thanks for taking the time to answer the questions Ger, we appreciate you donating your time. I'm going to close this up now to allow our next National Carer's Week AMA to begin - Now Ye're Talking - To a Family Carer for her Husband.