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Introduce myself -Carers UK Forum

Introduce myself

Tell us a bit about yourself here.
Just wanted to say a quick hi to what seems to be a very welcoming forum.

I'm Ryan. I'm a full time teacher and also a carer for my girlfriend who has POTS, EDS, fibromyalgia, prolapsed discs and suspected gastroparesis.

Long story short, it's starting to get in top of me so joined to talk to people who are/have been in a similar situation.
Hi Ryan,

Welcome to the forum, a lot of us first join because we are struggling with our role.

You must be on school holiday, now then. This relieves the pressure of juggling working and caring, but the restrictions of 24/7 caring leads to different issues.

How can we help?

Hi Melly,

Thank you for your reply.

My partner is struggling with her conditions and I do everything I can to help. But I think burnout has finally hit. Exhaustion has set in and she often perceives that as disinterest.

She has said I'm a partner but I'm not much of a carer, which I have found rather hurtful. She has said that everything I do is what a partner does - which I agree with - and that I may be her carer legally but not in practise.

She says I need to talk to someone - which I agree with - but when I mention issues I'm unhappy with she becomes very defensive and refuses to acknowledge them.

Sorry for such a long post. How are you keeping at the moment?
Hi Ryan,

I don't think she is much of a partner!!

As you work full time she should be making sure that her health issues are dealt with by someone other than you, as much as possible!! When did she last have a Needs Assessment from Social Services?
What practical help does she need?
Thank you for your reply, BowlingBun.

My partner said she feels I put too much on myself. She feels I do too much when there are things that she can do.

I do most of the household cleaning - floors, dusting, bathroom, kitchen - the cooking, helping her in and out of the shower, sorting out her drinks, dealing with her ESA claims, the shopping, taking her out regularly (she doesn't feel comfortable going out alone), taking her to most of her medical appointments, taking her to see her family every week 60 miles away. A lot less than other carers must do!

I recently put a PIP appeal together for her which was accepted. The support is only financial rather than practical. We're also going through an ESA tribunal in September.
Ryan, it should be her responsibility to ensure that the housework gets done, especially if she is not working. That means having a Social Services Needs Assessment and getting help. NOT dumping it all on you.
In case you think "she doesn't know what it's like...", I know all about being desperately ill. I nearly died once, major surgery leaving me with a scar almost right across my stomach saved my life, but that op took 3 years to recover from.
Whilst still recovering, I was nearly killed in a car accident, left severely disabled, unable to walk without sticks, waking up to 13 times a night.
But I still cared for my son with learning difficulties, ran a home, and a business, and support my housebound mum. Between the operation and the accident I found my husband dead in bed. That left me with 30 tons of lorry spares to sell, to earn a living!!
If you really want to stay, then you and your partner need to agree a new way of living.
Look at all the things that need doing at home, for the home, and for your partner.
Can any jobs be ditched altogether by doing things differently? (Ironing?!)
What can be done by someone else? General housework can easily be done by a cleaner)
Personal care? Social Services should arrange help.
Having as little as possible in the house, plus a tumble dryer and a dishwasher, all save time doing domestic chores.

In this way, you could become loving partners again, which should surely be your joint aim.
How long has your relationship been.
Did you girl friend have these issues when you met?
What was her profession. There sound like a lot of resentment from her.
She may need to attend some form of counselling. She needs help with understanding her current and future situation.
You can't be everything to her. None of us can.
We all need help and she needs to start to except outside help. And not except you to carry all the load.
Carers have needs too. I amazed at the things you are doing while working.
That has to stop and you need to start to employ people to help you.
You need your job for financial, sanity and future pension etc.
Hi Ryan
Imho it's time you both had a long talk about your partnership and how you are going to divide the tasks of living together as individuals and adults first and foremost.
If I've understood correctly her limitations are physical so why did you do her PIP claim for example? There are many tasks she could do for herself and many more with help that isn't you - physical aids or paid carers for example. That's what her benefits are for.
it's sounds as though the loving, caring side of your relationship has got muddled with the extra needs of her illnesses and perhaps you have unwittingly taken on too much, or maybe she has unwittingly let you do too much for her.
Think (to yourself) what would the relationship be like if she didn't have these physical issues - is she perhaps the sort of person who expects her lover/partner to do everything for her, or perhaps she would be wanting to do more for you?
You both need to find the balance that is right for your relationship. For some that's 50/50 others it may be 80/20. There's no right or wrong, it's what works best for you.
Once you've got the basics worked out, then you can add in the extra needed because of her conditions and how those are going to be met
Talking to each other, and listening, is key
Thank you, BowlingBun. We weren't even aware of the Social Services Needs Assessment and I know my partner is very keen to find extra support that will take a load off me. Those are really good tips and we'll certainly give them a go.

It sounds like you've been through a tremendous amount and I take my hat off to you. I'm so sorry you've been through all this. To do what you do is frankly amazing! What a fantastic achievement!