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How do you carry on loving? - Carers UK Forum

How do you carry on loving?

Share information, support and advice on all aspects of caring.
This might sound like the weirdest and probably heartless thing to say but I need to ask.

I am currently supporting my partner who suffered his first Psychosis episode in August last year (the day of my best friends wedding of which I was maid of honour...talk about timing! lol you have to laugh or your'll cry). It has taken until now to get him to the point where he notices I am his partner still took almost as much time for him to realise he hadnt seen his kids for a while too....its been incredibly trying and hard.
I have had the support of his Brother luckily who has helped care for him as I have a 4 year old daughter who I am trying to keep away from the situation as much as possible, whilst still attempting to keep things as normal as I can for both of them and his two children too.
What I am struggling with and battling in my own mind is...how do I continue love HIM? Because he isnt HIM anymore. Not the man I fell in love with, the guy who adored me and his little family. How do I remind myself what we have is worth this battle.
I am up against so many people who dont understand the difficulties, who tell me I should just leave him and live my life. But I cant. I think I do love him...enough to carry on, but I am scared that after seeing and struggling with all this that it will be easy to fall out of love with HIM. I am loving a stranger in essence and hoping that he returns, but what if he doesnt. I am 27, how long do I give myself before I allow some form of selfishness to rule my mind and continue life without him.
I dont want this to come across as selfish, I dont mean it that way at all. I have gone through a lot with him and supported him through everything and will continue to do so, but for how long is the question I guess.
I am scared that I am questioning my love for him. Before he had his episode we were good, we had already been through a lot but endured and we loved each other more than words can say. But now, things are different...the way I see him is different, do I love him..? Is this loyalty and habit rolled into one?

Does any of this make any sense to anyone? I am rambling on and even I am not sure what I am trying to say, he gets better then worse better then worse again, I have hope then come crashing back down again. Its like a rollercoaster and I just wonder how I can remind myself that I do still love him? How do I carry on loving a stranger in the hopes my love of my life will come back to me?

If you can make heads or tails of this I would really appreciate some advice.
Hi Charlotte, welcome to the forum. I don't have any experience of mental health issues, others will be along later in the day. I've lots of experience as a carer though. I cared for 4 elderly parents, and have a brain damaged son who is now 37 years old.
From all my experiences, the most important things I have found are
1. The need to have someone to "offload" to. A professional counsellor who can help me make sense of how I'm feeling and give me the strength to keep going when the going gets tough.
2. The need to look after myself, and my own health, despite everyone else clamouring for my attention.
3. The need to hang on to some of "me". I've had many different roles in life, but would always describe my self as "a keen needlewoman". My husband christened sewing as my "occupational therapy" when I was 21. When I'm sewing, it soothes away my cares for a while. Try to find time to do something which really pleases you, deep down.
Whatever happens to your husband, the well being of your children must come first, and have as normal a childhood as possible, it must be extra tough having step children as well. Is their mum still around and able to help at all?
Have you asked Social Services to do a Carers Assessment? In my area there is a special group for carers of people with mental health issues.
bowlingbun wrote:Hi Charlotte, welcome to the forum. I don't have any experience of mental health issues, others will be along later in the day. I've lots of experience as a carer though. I cared for 4 elderly parents, and have a brain damaged son who is now 37 years old.
From all my experiences, the most important things I have found are
1. The need to have someone to "offload" to. A professional counsellor who can help me make sense of how I'm feeling and give me the strength to keep going when the going gets tough.
2. The need to look after myself, and my own health, despite everyone else clamouring for my attention.
3. The need to hang on to some of "me". I've had many different roles in life, but would always describe my self as "a keen needlewoman". My husband christened sewing as my "occupational therapy" when I was 21. When I'm sewing, it soothes away my cares for a while. Try to find time to do something which really pleases you, deep down.
Whatever happens to your husband, the well being of your children must come first, and have as normal a childhood as possible, it must be extra tough having step children as well. Is their mum still around and able to help at all?
Have you asked Social Services to do a Carers Assessment? In my area there is a special group for carers of people with mental health issues.
Thank you for your reply, it means alot. I try to do what I can for everyone involved. His children are 11 and 15 so its difficult to keep his condition quiet as they understand something is wrong with their dad. Their mum is in the picture and I talk to her regularly, the only thing is she doesnt know much about his condition. She has a 2 year old with Autism of her own to deal with and with his condition possibly causing concern from her end my partners brother decided it best not to disclose too much information, only that its not a 'serious' illness (his mum recently passed from Cancer...possibly one of the causes of his psychosis... I think they worried it was that initially).
He has recently started a phased return to work and has a vocational specialist to liase with his work and him, however since returning to work he is how shall I put it...more paranoid than ever!! Hes currently on his way to A&E to have is heart checked over because he thinks hes having heart palpatations (he tried to download an app on my phone yesterday thinking it would actually XRay his heart :roll: ) Its either the meds or all in his head but he wont be told, hes been on the meds for a couple of months now so probably the latter but he still wont listen.

This is my worry and whilst it shouldnt make a difference, it kind of does.. he is my boyfriend/partner, which ever you want to call it, not my Husband, so a lot of friends and family see it as not being tied into a marriage if you like. I dont, I am his crutch no matter what and have been since his mothers death.
I think you are right about a Counsellor, I cant carry on questioning myself and not having people who understand his condition to talk to is incredibly hard. Whilst his brother understands his illness he doesnt understand what its like to love a stranger. I am so scared that I am not going to be strong enough to carry on loving him through this and that it will tear us apart.
I have to do this not just for him but for the kids. They havent had much stability in their dads life until we got together, they just managed to grow accostomed to it after a few rocky patches between us a couple of years ago. My daughter is 4 and he is all she has ever known. It would be like taking her father away from her.

I go through so many emotions every day. Do I love him? Course I love him...dont I? Yes.. Wait is it habit? Am I just being loyal to someone I care about? Will he get better? Yeah course he will...but what if he doesnt? How long do I give myself? Should I tell his ex wife? No because it could cause trouble between his family and me... but she has a right to know...

Its a constant battle in my mind, I just want him to get better for his and the kids sake.
What is a carers assessment? Should I have one even if he is on a phased return to work (I dont know if I am still classed as a carer or not), I am not getting a carers allowance (I havent asked in honesty) or anything like that. I am trying to be as self sufficient as I can.
"Trying to be as self sufficient as I can" is NOT the best thing right now. Believe me, I have the Superwoman T shirt, hat, fleece, the whole uniform, because I just kept going and going through all sorts. In the end, my husband had a heart attack and died, I had a serious illness requiring major surgery,...
You need every scrap of help you can get. A Carers Assessment will look at your caring role, how it is affecting you, and looks at if there is anything which would make your caring easier. (It's not assessing how good a carer you are!!!) What is available depends partly of where you live. There may be things locally which are not advertised, like pamper sessions, days out, etc.
Dear Charlotte

I would say that coping with someone who is mentally ill is an order of magnitude more difficult than someone who is 'just' physically ill (by and large, depending on the degree of either illness.)

But, as you say straight off, the main problem with MH is that you 'lose' the person into the mental illness.

I would say that committing your life to someone with MH is always going to be a 'rollercoaster', and, indeed, a minefield. I think that the best way to cope is to recognise that it is never (I suspect!) going to be a case of 'when he's cured'......the 'predisposition' will always be there, simply because it is there historically. Even if he picks up and never has another episode for the next thirty years, you will always, at the back of your mind, wonder whether he might relapse again.

So I'd say that that makes it essential for you to 'accept' the MH - don't hope for a 'magic day' when he's 'better for ever'. In a way, it's akin to a cancer diagnosis - you can have the diagnosis, have the treatment, and seem quite cured, but you will never ever truly relax again - even if the cancer never comes back, you know it might, and that makes a huge, huge difference to the way you live your life.

So, with MH, it's a question of anticipating in theory, preparing in practice, supporting when it happens, managing through to the next period of improvement, and then go back to the portion of the cycle that is the anticipation that it might happen again (and again and again).

The most important thing, I would say personally, is whether your partner accepts treatment for his MH (does he accept he has MH, or is denial part of the problem?)(it so often is, sigh.....)? If he is, then good, whether it's pharmaceutical or talking therapy or both. If he refuses, then that might be come 'grounds for your ultimatum' - either he gets into treatment, or you call time on this relationship.

May I say something about your children, both yours, and your stepchildren (you don't have children together with your partner, is that right?). I was raised by a mother with paranoid schizophrenia, and probably bipolar to boot (huge mood swings). She rejected treatment mostly (it was part of the 'plot against her' that was her paranoia!). My bro and I were, understandably, pretty much affected by this - but, and I do think this is important, we never, for a moment, didn't realise that mum had MH! OK, we weren't too sure about the paranoid aspects (I can remember once asking my poor father - who simply couldn't cope with any of this - whether people really were following mum around and trying to poison her!)(it was the first time her illness had ever been mentioned!), but it was pretty damn obvious she was not like other mums.....

So, with your step children, I suspect they already know something is 'not right' with their dad. I would argue, entirely personally, that keeping it from them, or trying to, is not only ineffectual, but probably unhelpful as well. What they don't understand, they may well fear. Understanding that their dad is ill, that his brain chemistry is going haywire, that the scientific understanding of mental illness is still confused and uncertain as yet, may be less scary from them than having things 'hidden' from them....

Can you and their uncle sit down and talk them through what seems to be happening with their dad? (Having prepared before hand what to say, and how much) - some will make emotional sense - he is grieving for his mum, some is acute anxiety (has he got a heart murmur, etc). I would say that his children would find it 'safer' to know they can talk to you/their uncle about any aspect of their father's illness - they may already be talking about it between themselves (my bro and I did!).

Also, did I get this right? You're not discussing his current breakdown with his ex because she is coping with a small child with autism (is that your partner's child?) and you don't want to upset her? But she may know far more about him than you do in some respects, and surely 'pooling knowledge' of how your partner has reacted in the past to stressful situations could only be useful?

As for your original question - stay or go - well, maybe you will decide to leave eventually, but at the moment, is it not worth seeing whether this particular episode can be overcome, or fade, and once it has (which hopefully it will) you will be able to assess whether you could cope with the rollercoaster of recurrence for the rest of your life. If you don't yet have children together, then any decision to leave the relationship at least will not be complicated by that very, very painful factor.
PS - forgot to say! It isn't in the slightest bit 'selfish' to be extremely wary of committing yourself to a lifetime of living with someone with significant illness, especially an illness which may not be curable, ever. I don't see it as selfish at all! (Especially as, yes, your daughter is the most important priority in your life)(though I'm glad your stepchildren have you as well - leaving their father need not destroy that relationship.)
PPS - sorry forgot to say this too!

If your partner is currently 'paranoid' about his own health, given that his mother has recently died I'd actually say that his concern is very 'reasonable'. When my own husband was diagnosed with cancer I had quite a lot of health checks done on myself, and I've remained on 'high alert' so to speak, and I'm also pretty 'hyper' about my son's health too.

Just because the medics like to poo-poo people as 'the worried well' and 'hypochondriacs' etc, does NOT mean it is 'mad' to want to have health check ups.

Losing someone we love makes us very, VERY aware of human mortality

So, if your partner wants health checks, then why not? The only problem would be, surely, if he did not 'believe' the results, and just went on and on and on having endless check ups!

(Also, panic attacks are very scary - I've had them in my time, and one can be truly convinced one is about to keep over with a heart attack. The irony is that it is the SYMPTOMS of a panic attack - palpitations etc! - that cause the fear - it feeds itself. Once the fear goes, the symptoms go....)
Hi, I know what you mean, though my circumstances are different. It's not that you don't love him, it is the fact that the person he was probably no longer exists? My daughter has psychosis, and is no longer the same person that she once was. As her mother of course I still love her, and it is probably only due to that intense bond that we have that I haven't walked away. If it was a partner, I cannot say that I would still be as supportive, I would have run, not walked away to be honest. I find that I cannot explain to other people just how utterly soul destroying watching someone you love suffer from mental illness is, not just for the person going through it, but for family members as well. My daughter had leukemia when she was younger, and went through 2 1/12 years of chemo, which was so hard on her in so many ways, and I said after that that no matter what life throws at me it will be insignificant compared to that. Well how wrong I was, this is so much worse that what she went through then! Do what is best for you and your family, you are not the only one having thoughts like that, thank you for sharing, as I now realise for the first that I am not the only one dealing with these issues x.
Bear in mind that psychosis is a very unpredictable thing. My brother's wife developed a severe bipolar illness after giving birth to their first and only child some 25 years ago: she had several manic episodes involving lengthy hospital treatment but now lives a very normal and stable life, and their marriage has survived.

Likewise, some episodes of schizophrenia are temporary and respond well to treatment.

So, it isnt all doom and gloom.
Scally - that's very encouraging! Though maybe post-natal psychosis is more 'endable' in principle, as it is so 'event-related' (I wonder if it's a form of PTSD??)

Also, on the schizophrenia front, there was some research published recently indicating that schizophrenia can almost 'self-heal' with age, as the parts of the brain affected sort of 'get better on their own' (I paraphrase!). Certainly my mum 'calmed down' a lot as she got older, and she had happier last years in her final sunset role as 'doting granny' - I think it helped that she wasn't really having to be 'responsible' for anything any more, running a house, raising children, etc, so that probably took mental pressure off her.

Zoe, always feel you can come here and say 'anything you like' - we all vent away here. And certainly (if sadly) you are most definitely NOT 'alone' here.