Hi. I’m new here and am struggling to cope…I seem to have reached a point where I don’t know what to do to support my husband and yet care for myself. My moods fluctuate between compassion for his suffering and anger at him for all the years wasted and the crap (can I say that??) I’ve had to deal with.
He’s in a real bad way at the moment this acute crisis phase has been going on since October last year and I’m forever nearing the end of my tether. Friends say it’s time to get out but the reality of that…well one minute I’m planning my escape and the next I’m hanging on in there! He’s suffered with his mental health for over 25 years and we’ve gone through some horrible times. Between those though there have been some calm almost happy times. More than anything I miss the man I married but hey ho he’s been gone for some while now…
He stays in bed a lot because he’s to scared to get up. I have to remind and/or cajole him to wash and eat. He sobs uncontrollably much of the time, says he would be better off dead but is too scared to take his own life (says he’s frightened he wouldn’t succeed)
Sometimes I think I’m enabling him to stay stuck and should detach more, other times I think I should be doing more for him
His GP has recently changed his medication and he’s been referred back to talk works, after he convinced everyone (except me) that he was well again!! That’s another part I find so difficult…some times he becomes quite hyper, convinced he’s cracked it and is well again. We go through a few days or sometimes weeks of him in an almost euphoric stage before he crashes again. He’s not been diagnosed as bi-polar but I do wonder
So sorry for the long post, I couldn’t think of anything to write…and then there was no stopping me! Thanks for reading
@Kazzac Welcome to the Forum.
I think your feelings are normal. Do you have a local ‘Support for Carers’ in your area? If so might be worth calling them as they often have regular meetings. Or maybe they could provide a ‘telephone befriender’ to talk your feelings through with. Do you have any help with caring for him and what sort of ‘day to day’ support does he need? I no longer prompt my husband to have a bath unless we are going out and I no longer try to get him dressed as a dressing gown is much easier to wash.
Do you get any time away from your husband? Do you have any hobbies or interests? Can your husband be left alone. Do YOU want to stay with your husband? Counselling may be a good option - but you do need to find a counsellor who has experience of working with people caring.
I am sure others will be along to give you other suggestions. I care for my 85 year old medically non compliant husband - I am 62 and have been caring officially since Jan 2013 but unofficially a couple of years before. He has literally nearly broken me mentally but I have ‘fought back’ and now have a small circle of good friends locally. I would suggest you are NOT being selfish to want to step back and focus on what YOU want and how to make your life more pleasant and easier.
@Kazzac……Hi, welcome to the forum. Your feelings are absolutely normal. I’ve been going through similar with my husband. Sometimes you have to put yourself first and do what is best for the future for you and your health long term. I get how very tough this is to do though.
This website is a great place to say how you’re feeling and the support on here from everyone is amazing. We’re all here for you anytime x
Thanks for your reply, much appreciated. I will look into a local ‘Support for carers’ group, I think there is one not too far away. I have no help at present but am thinking along the lines of him getting Attendance Allowance so as to pay for someone occasionally. That said, the form to claim is pretty daunting! I know I can fill on his behalf if he signs it but just gathering evidence and explaining everything is putting me off a bit.
I do get some time away, I have a few days booked with a friend next month and have been away recently for a long weekend, but I worry about leaving him and then get dragged back into the drama when I call to check up on him!
I so relate to what you said about your husband nearly breaking you mentally, but you fighting back…that’s just how I feel. I get so angry at times, he has so much to live for and is wasting his life, dragging me with him at times. Do I want to stay with him? No I don’t but finding the courage to do something about it is hard! I sometimes think I should leave, but then think why should I lose my home and him get to live in it. I then think he should go but then that that’s just cruel! I’ve tried talking to him about it but it just leads, unsurprisingly to sobbing and pleading, telling me he will get better, just give him more time!
And so it continues…
Thanks @Sue24 , Just knowing there are others going through similar is so helpful. I try to look after me but sometimes it’s so very hard and I feel guilty about detaching and then when I buy back into it all I get so angry! Life is hard at the moment but I’ve got good friends and now I have this forum so that’s positive! I’d love to hear how others cope and how anyone has actually got out…if anyone ever has!!!
@Kazzac Please do NOT try to fill in the AA form yourself. When I claimed back in 2013, one of my friends was very high up in the Dept that dealt with AA. She was in a different County but she strongly advised me to go to CAB or Age UK and get them to help to fill the form in. I went to Age UK and it got rejected the first time,. But my friend told me to appeal and I did this via Age UK and I got it through and backdated. With regard to Carers Allowance, if you are below pension age you could claim this but he needs to get AA first. You really do need help as it is a very daunting form and Age UK were excellent as the lady who came out had been helping people fill them in for years.
I would desperately like my husband to leave but cannot afford to buy him out even though house in my name. He would not be able to manage alone as a few months ago he let the oil boil dry when frying his steak and it set off the smoke alarm and we literally could not get it to stop. His answer was to ‘tear it off the wall’ but thankfully I got my neighbour round and we told him not to. I have housecats so opening windows was not an option plus had taxi due as had to chair a Book Club meeting. Unfortunately, this means I am always on edge in case he cooks. I got him an Air Fryer as suggested by some people on the Forum but he cannot work out how to use it. I am a veggie and we have never eaten together. He wont eat at set times either . He is also very deaf but has lost his second set of NHS Hearing Aids. He is medically no complaint and squirts his inhaler into his mouth rather than via a spacer. I have disengaged to a certain degree as MY sanity is important too. I do prompt re his pills but no longer chase him round the house to get him to take them. The Memory Clinic discharged him last May as he managed to pass the Memory Test despite scan showing moderate shrinkage of the frontotemporal lobes which to me, indicates dementia. Cost cutting exercise.
I think the only way I can get out will be if my husband is deemed to have lost ‘mental capacity’ total nightmare as the NHS will say someone has this when many of those involved in caring for them, feel they have not got it and are a danger to themselves and others. I desperately wish he would go into hospital and not be in a position to discharge himself and hopefully nature will take its course. But on and on he goes!
You have good friends but please have a think about finding a good counsellor to work through what is best for you. The anger and frustration is normal I feel - sadly I have no compassion and little empathy left for my husband. I will continue caring to keep my home.
@Kazzac, “I sometimes think I should leave, but then think why should I lose my home and him get to live in it.”
@selinakylie, “I will continue caring to keep my home.”
Unfortunately, I can SO relate to what you have both said here!
There are days when it all feels too much and I think is it really worth putting up with all this cr@p just to be able to stay in my own home, but the effort and stress of taking steps to change the living situation also feels overwhelming. It’s like a nightmare you never wake up from.
@EEG and @Kazzac cyber hugs from me and my feline family . I would not wish either of you to feel the way I do and the fact that you are in similar situations, is so sad. All we can do is try and find ways of making out situation bearable. For me it is my beloved cats, few precious friends and I can lose myself in a book.
@selinakylie Thank you for your advice, I will contact Age UK. I’m not even sure why I was thinking about doing it alone as I contacted Age UK for assistance in filling out both my Dad’s and my Step mum’s forms!
I am so pleased I’ve joined this forum, already I don’t feel so alone. I feel for you so much, and so identify with the 'on and on he goes’ bit. Massive hugs to you
@Kazzac evening! Welcome to the forum! It’s great to see you here, reaching out for support - it’s a huge step already@
You can see from the lovely replies from @selinakylie @Sue24 and @EEG that we care about each other, and have different experiences we can share, so I’m glad you’re here
I’m not a medic but big mood swings, and inability to motivate himself are classic symptoms I’ve seen / heard about when someone has severe depression or another mental disorder/illness like bipolar, just like you said.
You know better than anyone else about what ‘everyday’ norm looks like, and as he’s talked about death and dying, he needs help - to be honest it sounds like it’s the kind of help that’s beyond your ability or capability to do - this is NOT meant as a judgment of anything you’re doing or have done! When he’s ‘performing’ for medics he can convince himself and them he’s better. This cycling is when he has the support and attention he needs. Manic Depression needs more than single touchpoints…but again I’ve only been an observer and not experienced this myself.
Can you talk to the GP yourself without him, to share all this? Perhaps you’ve already done this a few times?
It sounds like you’re already familiar with a lot of services - just in case…have you talked to the listening services with MIND https://www.mind.org.uk/information-support/helping-someone-else/carers-friends-family-coping-support/support-for-you/
It sounds like you’ve reached a point when you want to focus more on your own safety and wellbeing which is SOOOO important. Figuring out what that looks like - potential options…
@Sue24 is navigating her way given the situation with her husband - so you may want to hear more from her.
Finances is an important part of all this, and with the house etc seeking legal advice may be important to just have facts in hand…this may all seem daunting and you may think there’s no solution…that’s all for you to decide, but before you do please get all your facts lined up
Carers helpline can offer advice on Attendance allowance etc and may offer some thoughts on where to seek legal advice Helpline and other support | Carers UK.
Sending big hugs…remember you’re not alone, AND feel free to rant, rage, share as much or as little as you want. There are NO judgements here just lots of empathy
For some light entertainment - you’ll find everyone on Roll Call everyday: https://forum.carersuk.org/t/roll-call-july-2024/125311?u=victoria_1806
For some giggles and solidarity: https://forum.carersuk.org/t/bumper-stickers-for-carers/123563?u=victoria_1806
@EEG Thank you for your input, I feel so much less on my own… I too can so relate to all of your post, especially
'the effort and stress of taking steps to change the living situation also feels overwhelming. It’s like a nightmare you never wake up from.’
The fact that we are here talking with each other gives me some hope that I will gather the strength one day in the not too distant future to get myself out…while I still have a life to live. Perhaps collectively we can help each other towards our goals xx
@Kazzac…your situation sounds similar to the position I’ve been in for the last few years. I’m 55 and my husband is 58. He’s had bad mobility problems for a long time now. We moved to a bungalow 2 years ago and from the moment we moved in his health went downhill fast. He ended up having a stroke, luckily not a major one. Then a hernia which twisted his bowel resulting in an emergency op where he nearly died. He then discharged himself early and got sepsis and nearly died again. He then ended up in hospital for 4 months waiting for a place in a physio rehab centre to learn to walk again. He lost what little mobility he had due to being bed bound. I pushed to get them to send him to the rehab centre as they wanted to send him home bed bound forever. He went to rehab and spent 3 months there learning to mobilise again. He then came home and didn’t bother doing the exercises he was taught or trying to continue building his mobility levels up. The physio team withdrew their services within the first week!!! He is now in a care home which he self funded for a while and social services are due to send him to another cheaper home as they now have to pay for it.
I totally get how angry and frustrated you are. I’ve been through it. It’s taken me a few years to realise that if I now don’t push for him not to come home I will have no future at all. I can’t go back to carers coming in (doubled up for 4 times a day) with no care help after 7 every night. It’s not selfish of you to want some sort of life for yourself.
I’m going to have to sell the bungalow as can’t afford to buy him out without selling but have reached the stage where I now see some light at the end of what was a very black tunnel. Keep strong and do what’s right for you long term.
@Victoria_1806 @Sue24 @EEG @selinakylie
Thank you all so much for your support and advice, it means so much to me…
So, yesterday he (Roger) was in total despair, ‘never felt so bad’, ‘can’t carry on any longer’, sobbing, petrified of everything, feeling ‘unsafe’ not eating, shaking and shuffling around like a man 25 years older (he’s 73)
Today he’s acting almost normal, helped get dinner, asking constantly whether I want a coffee, anything to eat etc etc. This rollercoaster is one of the things that’s driving me nuts… this period may last a few days, perhaps even weeks with the odd relapse. He starts to rebuild his social circle, goes out alone or to meet friends, talks about the future with me…Then the inevitable crash happens and it starts all over again. Can anyone relate to this cycle of behaviour because I find it so confusing. I used to get my hopes up that finally he was going to be ok, to get well again but my hopes have been dashed so many times. It almost feels like it’s all part of some form of manipulation to keep me in there fighting for and caring for him 
@Kazzac Cycles of behaviour, this many times - intentional or unintentional, caused by a mental illness or not…its eroding your quality of life, and your own mental state…ie unhealthy for you and regardless of whether he can disrupt his own cycles and whether he wants to or not
are all questions HE needs to figure out… and I think what you’ve written proves that you’re not equipped with meds/psychology/diagnostics to find the WHY or the HOW to help him
tough love hon you need to make your choices for you first
There comes a point of deciding and choosing - head, heart, gut aligned on what you want and why…no one can tell you…
TBH it could be manipulation, but it could also be a mental disorder that’s not been properly diagnosed…but I think from what you’ve already shared…its a moot point and you want things to change permanently rather than recycling again and again on an uncertain timeline…That uncertainty will make you walk on egg shells and erode your own mental health!
BUT we can only speculate and support you…there are many things we can hypothesise offer thoughts BUT I think you need tangible practical facts and information to help you move forward…I think MIND listening services could be helpful too
Manic depression is like when a person is drowning and you jump in to save them and they drag you down too…when someone is flailing and drowing we’re taught to pause, find a flotation device or something they can grab onto themselves…don’t get dragged under!
@Kazzac…hi, just checking in to make sure that you’re okay?
@Sue24 Thanks! I’m okish! Been kind of busy trying to work out how to get myself out of this nightmare! I’m currently looking at renting a furnished flat for the winter (lots of winter lets here in Torbay) That way I can allow myself some time to build up my strength to either return permanently and resume role of full-time carer or maybe support him from a distance. Fortunately I have some savings so can consider such a move
@Kazzac….I’m glad you’re as okay as you can be at the moment. That’s good to hear that you are making plans to sort the situation out so that’s it’s not so overwhelming for you. Sending a big hug 
Hi and welcome. I support my wife’s bipolar and her (dis)honest approach to it.
You described well what many carers go through. i.e. our moods fluctuating between compassion for their suffering and anger at them for all the years wasted and the dishonest/rubbish we have to deal with. It truly is all consuming!!
You will find some solace, as I did, joining this group, which will demonstrate how many people are going through similar and worse. Unfortunately to the outside world for those who are not experiencing these challenges, they havent a clue what it is to be a carer is these situations, they do not know the life you are living at home behind closed doors and sometimes they want to give their 2p worth of useless advice which can make matters worse.
I hope you will also manage to find a local support group and hopefully that will help you too.
I wish you well.
I’ve only just joined, and finding others like yourself feeling the same , really helps. Particularly the ‘best behaviour’ for doctors etc, I’ve tried telling GP he is not at all like he is during appointments. I get so angry, then remorseful, seems a never ending loop. Bless him he gets so upset, I say horrid things just from frustration at not being able to ‘mend’ his pain. I hope you can find a way through, but know you are not alone. Its the elite group none of us wanted to join! But we need to remember his/ her pain, we aren’t going through it like them it must be hell, but we need to keep ourselves safe and sane.
@msgman Thank you! Yes, I’m finding some solace in this group, knowing that others do understand because they are going through similar and worse. You are so right that those not experiencing such challenges have no idea what it’s like and often make what they think are useful suggestions which are at times laughable if not so frustrating!
Today I went out just for a few hours, just to get away and ended up in confrontation with a group of younger women in a coffee shop! All over not having enough space for my chair!! I ended up leaving the coffee shop in floods of tears looking a right idiot!! And then went home to the usual cr@p!