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?
Melly1
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
Kr
MrsA
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!
Thank you, SunnyDisposition. My girlfriend didn’t have these issues when we met two and a half years ago.
She was a theatre assistant at a private hospital, so she’s finding it really hard to cope with such a drastic change.
She’s going to attend psychotherapy as part of her pain management. She’s said that I need to attend counselling and she agrees that she needs to as well.
I think it’s been especially hard as I’ve been teaching children who have very severe needs and behavioural issues as well as getting them to make two years worth of progress to pass SATs (thankfully we got there!)
Senior leadership are very happy with the results and parental feedback so pay rise has been agreed, which will certainly help to fund more support.
Hi MrsA. Thank your comments.
We’ve had a long serious discussion and have agreed to share out tasks more equally. My partner and I agreed that I’ve taken on too much myself and that she needs to do more for herself.
Her limitations are both physical and neurological, so we had to break the PIP assessment appeal into manageable stages over time as her mental capacity fluctuates.
She’s been very clear that she wants to do a lot more for me - mostly because she wants me to be happy. She’s said I need to find hobbies and make time for myself. Not be limited by her disabilities. So I’ve got back into my sprinting and creative writing today which I’ve absolutely loved!
Thank you so much for your support and kind comments. I really appreciate it.
Hi Ryan,
It’s really sad, for both of you, that so many issues have developed in such a short time. Your worlds have been turned upside down, maybe you are both grieving for the future you planned.
My son was brain damaged when he was born, at the age of 40 he can’t read, write, or do any maths, but lives in his own flat with carer support. He has done incredibly well to reach this stage, thanks to the hard work and dedication of teachers like you.
You both have many skills to draw upon, so once you’ve had a well earned rest, think about how to streamline the house as much as possible, and accepting that what you want may not be possible.
After I was disabled in a car crash, I had to do something drastic with my larger than average garden. My eldest son bullied me into doing away with all the flower borders, the shrubs, lilac trees and apple trees. My late husband and I had built the garden from nothing, I was really upset about all the plants i’d tended being lost (on Freecyle) but really it was the best thing I’d ever done.
You may not have a large garden, but maybe there is something from your old life that is making this new, changed life especially difficult for both of you?
Hi Ryan,
I had a lovely day yesterday, thank you. I met up with a friend I made on the forum and did some gardening while S was out for an hour in the evening.
It sounds like you and your partner have had some fruitful discussion and made a plan for how to improve your situation. I’m glad the time spent sprinting and writing was helpful; when we are happy, our carees benefit too. The challenge will be to maintain your hobbies once you are back at school.
I employ a cleaner to help me when I’m at school, just two hours a week - worth every penny. It’s one less thing for me to juggle. BB always says which of the chores do you hate the most - that’s the one to get help with.
Your partner will have a financial assessment if she meets the criteria for support through a Needs Assessment, if she needs to contribute to her care, then she can use her benefits. Needs assessment | Carers UK
Sorry this post is disjointed - my mind is thinking about To do lists as I type!
Melly1
BowlingBun, I’m so sorry to hear all this. It must be very challenging but rewarding to see your son see so much progress. Well done to both of you for making such a huge achievement.
It must be really tough to lose something that you’ve invested so much in, but I’m glad it’s helped you.
Thank you for the advice. We’re working on streamlining tasks and as my managers are happy with my class results and given me a pay rise, it means more of my partner’s funding can be used to support with the home.
As always, thank you for your generous and helpful advice.
Melly, I’m glad you were able to have done time for yourself and meet with your friend.
I think the discussion has been helpful but it will take time to see if it’s had a lasting impact. There are things we still might disagree on but we’ve compromised and made changes where we can.
I think employing a cleaner is a great idea and something that we have discussed.
Thank you again fir your kind advice. I really appreciate it.
I hope your To Do list isn’t proving too difficult. I’m glad you are getting time to meet others and take time for yourself.
Ryan
There are things we still might disagree on but we’ve compromised and made changes where we can.
That sounds promising and is true of any friendship/relationship.
Did you do some sprinting and/or writing today?
Melly1
Thank you, Melly. The hobbies have really helped. Going in to school to do some work for next year with work pals has really helped too.
I think, in the nicest possible way, my partner and I have been spending too much time with each other.
Ryan, that sounds much more positive. Well done.
What hobbies or interests can your partner do now?
Ryan_19071
I think, in the nicest possible way, my partner and I have been spending too much time with each other.
Oh yes, I can totally empathise with that. That will be S and I when he breaks up from college and we are joined at the hip for nearly three weeks …
Have you finished your planning? Do you have your own classroom/base or do you have to move around?
Melly1