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Hi, new here - Carers UK Forum

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Hi, I've just joined the forum as I haven't really anyone to talk to in real life. I'm caring for my husband who has multiple health problems and I've got to the stage where I'm really struggling. He's had health problems for a long time but over the years they've gradually got worse and as he's gone downhill, I've moved gradually into a more caring role plus taking on most of the household chores/shopping/cooking/looking after kids etc and I'm finding it exhausing and stressful.

His mobility is restricted due a spinal condition, arthritis and sciatica, he has severe depression and anxiety and is unable to go anywhere on his own, even the local shop or GP surgery, so I have to do all the shopping, run all the errands and go with him to every appointment. He also has diabetes, angina, sleep apnoea and severe reflux which leaves him choking and gasping for air quite often through the night. His memory, concentration and motivation isn't good and because his sleep is so disrupted at night, he's always sleeping through the day. He relies on me to make sure he takes his tablets, eats properly (he misses meals which isn't good for his diabetes) and make meals as he cannot stand long enough to make anything more than a sandwich.

While I want to be there for him and I know he'd do the same for me, I have my own health problems and cannot cope with working, caring and doing all the household duties as well. I reduced my hours a couple of years ago due to my own health and at the time that worked okay as my husband was still able to do things around the house, help with shopping/errands/cooking and could look after himself. As he's got worse and can't do nearly as much as he used to do, I've gradually had to take on more and more and I just feel I can't do it anymore. I could work or I could care, but I cannot do both and it's really affecting my health. I have a long history of depression and anxiety, plus diabetes and some kind of inflammatory bowel condition which is being investigated at the moment. I don't sleep well, often not getting to sleep till 2-3am and getting up for work at 8 feeling rotten. I'm constantly exhausted and stressed and I know my diabetes isn't under control as well as it could be because I don't look after myself as well I should - either over or under-eating, eating the wrong things, too much comfort food and forgetting to take my medication at the right time despite trying to keep my hubby on a strict eating/medication routine to keep his diabetes controlled.

My job is very stressful and it doesn't help that we live in tied accommodation which is attached to my place of work and comes with the job, so I never really get away from the place (due to finances and my husband's health we don't go away very often). Our neighbours are also my clients and some of them are not very nice people and have made our lives difficult with malicious gossip, invasions of privacy and harassment. Now they're leaving us alone but they're constantly at war with each other, so after a day of dealing with conflict and people in a highly emotional state, I'm absolutely drained. My work and my home life are both being affected and I feel like I'm not doing very well at either.

The problem is that if I leave my job we have to move out of our home. We have nowhere else to go and when I asked the council what would happen if I gave up my job, they said they would probably regard us as making ourselves voluntarily homeless so they wouldn't give us any help. I'd also be sanctioned for benefits for leaving a job voluntarily, so we'd be homeless and penniless in one stroke - I feel so trapped! Private rent isn't an option as we don't have the money for bond/deposit etc plus the fact that finding a private landlord to take on someone on benefits (specially someone with benefit sanctions) would be impossible. We are well and truly trapped by "the system" for both housing and benefits, and sometimes I really wish I'd never taken on this job, though six years ago when I started both of us were in reasonably good health and didn't realise what was around the corner.

We applied for PIP for my husband and he had a medical last week so I'm praying he gets it, as at the moment that is the only way I can see us getting out of this situation. If he gets PIP care, I'm hoping that's a way to be able to pack in work without sanctions as I should be able to claim Carers Allowance for looking after him, then we should get help with re-housing as I'd be regarded as leaving my job to care for a disabled person which would be accepted as a valid reason. I'm praying he gets it as I don't know what I'll do if he doesn't. I know we can appeal, but that could take months and we've already waited six months since we applied. I talked a little to a colleague a few weeks ago and she said why didn't I go on long term sick so eventually they'd have to finish me on the grounds of ill health, rather than me resigning. I don't really want to do that as I'd feel like a fraud but feel I might have to if there isn't any other way to get round "the system"!

Anyway, sorry for the long rant but it's nice to get it out, thanks for reading.
Dear Janet, the image I get of you from your post is of a pillar that is holding aloft an entire raft of responsibilities....and the pillar is cracking....

It's absolutely clear you can't go on as you are, and you'll hardly need me to tell you that!

I hope that the 'Exit Door' from this untenable situation will be provided by your husband finally being declared disabled (and I can't for the life of me see him as 'able-bodied' in body or mind from the way you describe him), so that you can then, as you say, become his official carer, enabling you to have some financial recognition of that, plus, most crucially, re-homing.

That said, if the time frame for achieveing that is still too slow, then it would not surprise me in the least if you DID crack, and have to take long term sick leave (which, again, should instigate necessary changes). And 'fraud' would be the very LAST thing I would think you! To my mind, it's a tribute to your strength of character that you haven't been carried out in screaming your head off long ago with what you are trying to cope with!

I hope that you have reached 'crisis point' in that from now on, things can start to change for the better finally. You most definitely can't go on as you are.

Wishing you all the best possible -
Hi Janet,

Gosh, what an awful situation, I'm so sorry you're having to deal with all of this at the minute. Health problems are hard enough but add financial/work/housing problems to that and then gossiping neighbours and it really does just get too much.

I've no practical advice but I know a lot of people have recommended the Carers UK helpline for benefit advice and advice on work/caring situations so perhaps have a good chat through it all with them if you haven't already. I'd also ask Shelter about your housing situation, simply because my experience of councils and council housing is that they often don't give you the right information so do check everything out before you make any big decisions.

I do know that most councils can assist with private rentals in some situations, either with lists of landlords who accept benefits or with helping with deposits. It varies from area to area so I'd check everything out with Shelter first and then check your individual council. I would say (from experience) to double check everything you are told with another source as unfortunately the public sector seem to be the least knowledgeable about the situation in most cases! Hopefully you'll at least be able to clarify where you stand with everything with each different scenario.

Others will have more advice with you (who've been in the same situation so will know what to do) but always keep posting, you're not on your own! xx
Thanks for your words of support - it really helps to know there are kind, understanding people out there! I never thought of contacting Shelter for housing advice and will try and do that today, as I'm sure that if we could move away from our current living situation we would both feel better.
I did ring the Carers UK helpline a couple of weeks ago and they were really supportive. She thought the best thing was to wait till we'd had the PIP decision before deciding what do do next. They did say I could ring back for more advice when we had the decision, and if we do need to appeal we have a very good benefits advice centre locally who will be able to help.
I'm going back to the doctor on Friday about my bowel problem, maybe if they can diagnose and start treating me it might help me feel a little less drained.
Hi Janet,

Your situation is very similar to mine where I care for my wife who is disabled following spinal surgery and I work full time.

I'm currently off sick due to stress as I'd reached crisis point and this has also been a wake-up call to my employer.

When you see your doctor next you should discuss the situation and ask for time off to recover and give you space to sort things out. Also ask your doctor to refer you to Social Services for a needs assessment for your husband and a carer's assessment for yourself.

I too suffer from sleep apnoea and found myself falling asleep during the day and choking at night. I was referred to a sleep clinic and was given a CPAP machine that delivers pressurised air through a mask to keep the airways open whilst in bed; this has transformed my life as I now sleep properly and do not disturb my family (and neighbours :shock: ) with snoring.

Unfortunately it takes a crisis to get the help you need and I wish you well.
Hi Mark, thanks for your reply. I'm glad the CPAP machine is working for you, my husband has one but hasn't used it for a while as he had a serious choking fit one night while wearing it and thought he was going to die. It really scared him and he can't drop off to sleep with it on anymore. He's had loads of choking fits but when we've asked various medical people including the sleep clinic nurse and the GP what is causing it, they've not been particularly helpful, saying it could be the acid reflux or it could be the sleep apnoea and not offered any useful advice which is really frustrating.

I saw the GP today who said I have stress-related IBS and that my depression and anxiety has got a lot worse. I told him I wasn't sleeping so he gave me another anti-depressant (on top of the one I already take) to take at night as he says it will make me sleepy so I'll try it over the weekend when I don't have to get up for work and hope it doesn't make me like a zombie. I didn't ask for a sick note and he didn't offer, but if things don't improve in the next week or two then I think I'm going to have to go back and get one. I'm due to see the diabetic nurse soon and I'm sure my blood sugar will be up, and they said if it didn't improve I'd have to go on insulin - something else to look forward to!!

I spoke to someone at Shelter who was really helpful and said I could make an application to the council as homeless without handing in my notice and giving up my job/home, as you can apply for homelessness if it's no longer reasonable for you to stay in your existing home. He was pretty sure we should qualify under that rule, specially now my GP has confirmed my health is being affected by our situation. According to Shelter we can stay where we are until the council have decided whether to accept our application so that makes me feel a lot better. I'm going to see a local housing adviser next week for some help to make the application.

I feel a bit better knowing things aren't quite as hopeless as I thought, and I'm hoping it's not too long before my husband gets his PIP decision. I cannot imagine him being turned down, but I know people with worse health problems than him do because they haven't answered the questions in the "right" way, so I'm half expecting us to have to appeal.
Janet_1409 wrote:Hi Mark, thanks for your reply. I'm glad the CPAP machine is working for you, my husband has one but hasn't used it for a while as he had a serious choking fit one night while wearing it and thought he was going to die. It really scared him and he can't drop off to sleep with it on anymore. He's had loads of choking fits but when we've asked various medical people including the sleep clinic nurse and the GP what is causing it, they've not been particularly helpful, saying it could be the acid reflux or it could be the sleep apnoea and not offered any useful advice which is really frustrating.

I saw the GP today who said I have stress-related IBS and that my depression and anxiety has got a lot worse. I told him I wasn't sleeping so he gave me another anti-depressant (on top of the one I already take) to take at night as he says it will make me sleepy so I'll try it over the weekend when I don't have to get up for work and hope it doesn't make me like a zombie. I didn't ask for a sick note and he didn't offer, but if things don't improve in the next week or two then I think I'm going to have to go back and get one. I'm due to see the diabetic nurse soon and I'm sure my blood sugar will be up, and they said if it didn't improve I'd have to go on insulin - something else to look forward to!!

I spoke to someone at Shelter who was really helpful and said I could make an application to the council as homeless without handing in my notice and giving up my job/home, as you can apply for homelessness if it's no longer reasonable for you to stay in your existing home. He was pretty sure we should qualify under that rule, specially now my GP has confirmed my health is being affected by our situation. According to Shelter we can stay where we are until the council have decided whether to accept our application so that makes me feel a lot better. I'm going to see a local housing adviser next week for some help to make the application.

I feel a bit better knowing things aren't quite as hopeless as I thought, and I'm hoping it's not too long before my husband gets his PIP decision. I cannot imagine him being turned down, but I know people with worse health problems than him do because they haven't answered the questions in the "right" way, so I'm half expecting us to have to appeal.
Oh Janet well I'm glad at least that the housing situation seems a little more hopeful, such a major thing to worry about, fingers crossed re the PIP decision, hopefully once the stresses are a bit more manageable your own health will improve, makes me so cross that a lack of support makes everybody else ill, ridiculous way for the public sector to go about things but there's such a lack of joined up support. I hope things start to get better for you now.
Hi Janet and welcome,

I'm not surprised you are struggling, your situation sounds desperately hard. Nothing is worse than being stuck in a situation and seeing no way out and feeling powerless ... I hope your husband gets the PIP. If applying for it is anything like the old DLA, then you/he must fill in the forms or whatever with "worst day/ scenario answers. Good that shelter are being helpful.

Melly1
Hi Janet,

I hope that the new medication helped and am pleased that the housing situation is getting sorted.

Try and look after yourself and if you start to feel worse get time off work before you hit crisis as I did (not to be recommended :shock: ).
Dear Janet, I really feel for you and I truly hope that you are able to sort out your work/housing situation soon, which I'm sure isn't helping with everything you already have to cope with. You are a very strong woman and I really admire your courage, I know from my own experience that it isn't easy, and like most carers I can relate to your situation.
I'm glad you've found this site, its reassuring to know there's somewhere to go to get support, advice or just to 'let it all out'. You're doing a great job and you have inner strength that will keep on giving you the ability to get through get through this.
Very best wishes xxx