New and struggling

New to Carers Connect
1

Hi and thanks in advance for reading. Sorry, this might end up being a bit long!

My partner and me have been together for about eight years now. I knew going into the relationship that he had severe anxiety and Asperger’s and that he would need some support with those. I have neurodifferences of my own and anxiety, so I had a fairly good understanding of what he needed and we talked it all through early on.

Things have worked fairly well for both of us since then. Obviously, there have been some blips, but generally we played to each other’s strengths and weaknesses pretty well.

Last year, my partner became ill and ultimately ended up in hospital. We found out he has a chronic physical illness which is going to mean he needs a lot more support and at least one lot of surgery. Since then, his needs have obviously changed.

I’ve found myself in a position where I’m trying to run a small business, sort out issues with my late Mum’s estate (she died last year), take care of bills/house admin, help my partner with his physical needs and try to do enough housework and laundry to keep things liveable.

I’ve tried reaching out for help, but unfortunately my partner wants to tell people about his new condition in his own time and I’m trying to respect his decision. Those who are in the know just keep telling me to let some things go - like maybe leave the housework - but I’m literally doing the bare minimum we can get away with and still not get sick/evicted/run out of money to cover basics. I’m essentially estranged from my family at this point and my partner’s family seem to be actively avoiding us.

I feel so guilty for the way I’m feeling about it all - anger and resentment mainly, with a huge helping of self pity. I love my partner and I’ll absolutely support him through this and anything else, but I was a young carer to two unwell/disabled parents and never expected to have to do this all on my own again.

Add on top of that that I’m having my own health issues. I have ongoing issues with anaemia and have been fainting whilst trying to do things. I haven’t had time to even think about getting myself back to the doctor and I don’t have the luxury of taking it easy and looking after myself right now.

I’m not really looking for advice I don’t think - maybe a bit of sympathy and understanding from people going through similar. If you made it this far, thanks for reading my brain dump :slight_smile:

2

That’s what we are here for!

What is the nature of his illness?
His refusal to explain to others what is the matter with him is making YOUR life far more difficult than it need be. In effect he is punishing you for a crime you didn’t commit!
Time for him to man up I’m afraid, and sort things out properly. You do NOT have to stay with him, no one can force you to care for him.

3

If your partner was in hospital and came out needing care, was this arranged for him before discharge? He should, at very least, have had 6 weeks free “Reablement Care”.
He should now have a Needs Assessment from Social Services, and you, a Carers Assessment.
He may also be entitled to Personal Independence Payment, usually referred to as PIP. Don’t let his pride/stupidity get in the way of help that he needs. It’s really important that you establish boundaries about what you will/won’t do for him, to maintain a proper relationship.

4

Hello CatHeart, You must look after yourself first and foremost. You are trying to juggle so many plates and for the moment they are (almost) in the air…but the minute one drops - and that could be you, consider the consequences.
Please, please look into your anaemia and fainting and take a bit of time for yourself.
Since his hospital visit his needs have changed…but so have yours. Immediately you should consider yourself as his official carer. Get as much information as you can - from Carers Uk…they are a wonderful for information and support.

5

Catheart, you really do need to see the doctor, because if you have a car accident, your insurance will probably be invalid. Furthermore, the DVLA may take away your licence for a year. This happened to a friend of mine.
If it relates to your monthly cycle, then get yourself sorted. Before my hysterectomy many years ago, I was so weak that if I crossed the road, I had to sit down the other side. A few months after the op, I was running in the New Forest with the neighbour’s teenage daughter. Don’t suffer.

6

I really wasn’t looking for people to be mad at him or suggest paperwork etc. that I’m just not up to sorting out. I don’t/can’t drive already so that’s not an issue either. My partner isn’t trying to be cruel or difficult. I’m not going to leave him, I love him very much. I was just hoping to connect with a few people who understand how I feel right now.

7

Catheart, you said that you were “struggling” in your introduction. There are many, many carers here who have ended up with long term health issues, and in some cases ruined lives, because they became a carer. Bit by bit, then more, and more, and more, until their whole lives were taken over by caring for a parent or partner. Often the caree doesn’t appreciate just how much the carer is really doing, as they become totally self focussed on themselves or their illness.
My own husband died at the age of 58, and I shall always believe it was the stress of caring for his parents and our disabled son that was largely responsible. His dad lived until he was 87!
It’s not a case of telling you what to do, but trying to flag up the potential problems and pitfalls. It’s so much easier to start the way you mean to go on.

8

Hi Catheart, there are no easy answers, you are under immense pressure at the moment and from my own experience I can only say that seeing a counsellor, for me, was the beginning to thinking through how I was going to manage my caring and to see a way forward. Do not underestimate the effect on you of losing your Mum, (the amount of paperwork involved is just too much. My Mum and Dad who were our biggest supporters died within 9 months of each other 3 years ago). The counselling I had gave me time to think about the future for myself and my disabled daughter, and we now have a ‘plan’ and life is not so stressful… Please see your GP about your fainting episodes and talk about how you are feeling. Do you have a Carers Centre in your area? They may offer counselling?.
Take care of yourself.