Am I wrong to pin my hopes on carers assessment for help?

What a night, 2 of the cats cried continually with a third joining in occasionally and I spent the night trying to placate them so they didn't disturb my daughter and grandkids. This wasn't easy as my daughters house is open plan downstairs with no doors so I had no way of stopping them going upstairs which they did frequently, crying their distress at being taken from their home!
I had to sleep?! on the settee which isn't very wide but my daughter has now gone on her holiday and the kids have gone to stay with their dad so from now on I'm sleeping in my daughters bed and the cats will find it much less stressful without the 3 kids here.
I'm so glad you said it's good I didn't leave the phone number, I've still been worrying which is silly I know but I can't help it. But then I realized that Don has my mobile number although I'm pretty sure he wont remember he has it! Both his sons know my mobile number though so I'm sure if they really need to contact me they will.
I have no idea how often his sons will visit or how long they'll stay when they do but they will see things as they really are and then know I have not exaggerated about how bad Don is and how impossible the situation is.
When I wanted to stay with my other daughter last month I tested Don to see how he would cope, I stripped his bed (where his catheter had leaked) but didn't make it back up, I stopped doing everything for him, didn't do the dishwasher or the washing. He slept in his bed unmade and even though I'd explained to him he needed to do the dishwasher and the washing and offered to show him how to set them his reply when I asked him when he was going to do them was "I didn't know I had to"! So I explained again, again offering to show him how to set them to which he replied "no, it's not rocket science, I'll do them when I'm ready"! But he never did! After 3 days we had no clean kitchen utensils, plates, bowls etc and the washing stunk so bad i'd had to put it out in the shed. He'd taken a dirty duvet cover from the washing and his duvet was stuffed in it in a lump, he had no clean trousers and when his catheter leaked again he took a dirty pair from the washing, I tried to stop him telling him they were dirty but he put them on saying they were dry! He reused dirty plates/utensils which I'm sure was the reason he had a bad upset stomach.
I was in tears by the third day and spent it catching up on the backlog, realizing there was no way I could go to my daughters for 3 weeks as he couldn't even cope for 3 days!
Yet he was still adamant he will be fine, that he will cope and was looking forward to being on his own. He has obviously forgotten about those 3 days!
I know he won't cope but have no expectations of him admitting this. I want his sons to see the true picture but at the same time I don't want them going and doing everything for him as HE needs to see that he CANT manage on his own. Maybe, just maybe he will then realize just how much he DOES need me and will treat me better when I go back?
And once his sons know how things really are then maybe, just maybe they will realize they HAVE to help? If they could get him into a routine of going to their houses to shower just a couple of times a week it would make a tremendous difference.

The sons need to see firsthand what the real situation is, so not leaving our number was a Good thing. enjoy be
ing with your daughter while you have this time. And seriously think about whether you can go back to living like that!

No, you are NOT wrong to not have left your number. Let his sons assume his care. They may go back to the people who did the assessment...let them fend for themselves. Just relax and think about starting a new life for yourself, free from the obligation of trying to help someone who doesn't want your help.

Thanks Blannie, I am now at my daughters with my six cats and Don is on his own. He actually went shopping this afternoon, I refused to buy him the port he drinks and he's been saying he was going to go buy it himself for over a week but until today he kept putting off going. He also bought himself some dinners even though the freezer is well stocked. He is really pleased about me going, said he will be fine but there are so many areas I'm concerned about, I know he often leaves the fridge and the freezer doors open, he makes huge messes in the kitchen, leaving them for me to clean up, he won't use the dishwasher or the washing machine, when he runs out of bread (he eats white where I eat brown) he doesn't think to look in the freezer for more, he puts loads of items in the recycle bin that are not recyclable that I always fetch out, there is no way the bin men will empty it and if he sets the smoke alarm off he'll not realize that's what the noise is. He eats in the living room that is carpeted and even though he's always dropping food on the floor he hates the Hoover and won't use it. He never notices when he forgets to do up his catheter switch, has a special plastic mat near his chair where the urine will cause puddles that he'll then trail through the house and into his bed.
He asked me to leave him my daughters phone number but I forgot and I'm wondering if that's a good thing? Her number is in my book in the drawer but I know he wouldn't think to look in it if he needs to speak to me. But I'm here for a complete break and I feel I don't want him ringing me. Is that wrong?

Kaydi I'm so sorry you have to go through this and I'm sorry Don isn't getting the help he needs. It just shows the shortcomings in the systems around the world. You're still wise to get out with your cats to your daughter's home. Don has sons who can assume responsibility for him - it's not your job or your obligation. Please let us know how you're doing once you leave and go to your daughter's. Hugs to you - you've been through h$ll with Don!

I now know I was wrong to pin my hopes on the assessments as social services are not going to help us! As for testing Don's mental capacity, the woman spoke to Don for 10 minutes asking him if he is looking after himself to which he replied he is, that he showers every day and doesn't need anyone interfering as he is perfectly fine! He was in bed (where he spends much of the day, his bed is in the living room) n he stayed there but they could see he still had the same filthy sweater on and they must have smelt him. They then asked me and I told the truth, that he hasn't showered for weeks, I didn't get any further as Don started shouting, telling them not to listen to me. When they ignored him he told them repeatedly to check my medical records which again they ignored. But I knew what he was implying, I have a history of depression and had peripual psychosis after both my daughters were born and psychotic breakdowns in 1999 n 2004 and because I have adult Attention deficit Disorder I'm classed as mentally disabled and he was implying I'm not right in the head! Thankfully I've been well for 12 years and he knows this but he's often yelled at me that I'm insane and need sectioning when I've tried to get him to shower as it knows it upsets me. But my medical history has nothing to do with this apart from the fact that a mentally disabled woman should not have had to care for someone as ill as Don's been in the last 2 years.
He lost his temper several times telling them he just wants to be left alone, goodbye. So we then all went outside to discuss him and Helen said he knows what he wants so has got mental capacity! I reminded her about the four phone calls that Adult Social Care made to him to ask his permission to assess him, Don refused each time and when I asked him why he keeps refusing he said he hadn't refused and wouldn't refuse if they asked. I then reminded him of the last call in which he'd told them to ignore me as I'm "off my trolley" and he said he does remember the call but didn't know it was about an assessment! I would have thought that said more about his mental capacity than him yelling that he wants to be left alone! Helen didn't comment!
They said there is nothing they can do to help even though they said it's obvious he is not looking after himself! I then mentioned the dementia and they asked if he's been diagnosed, I told them he refuses to see the GP so I can't get a diagnosis. They then said they think he has depression, not dementia and Don's son Christopher, who came with them, agreed! I told them Don's eldest son Andrew visited recently and he told me he'd picked up on the fact he has dementia. Andrew obviously hadn't told Christopher though! I showed them my list of dementia symptoms which they all read but they still said they think he has depression!!
I couldn't believe my ears - depression does not change someone's personality making them aggressive and abusive, nor does it cause you to forget you've eaten dinner, make you impossible to reason with, cause you to get AM n PM muddled up, go out without your trousers on or believe you shower daily when you don't shower for weeks at a time. Nor does it affect your short term memory or prevent you retaining almost everything you're told. But nothing I said convinced them he has got dementia and is not depressed!
I told them I've arranged to take my cats to go stay at my daughters house on Friday and even though they admitted Don can't look after himself and know he has said he won't take his medication they said they think this is a good idea. I asked if they will come to check on him, they said no but Christopher said he and his brother David will do. They asked if Don does any of the shopping, I told them he doesn't as he won't use a computer, that I do it online. What I should have said was that Don does NOTHING to contribute to running the household as I had to take over doing it all when he became ill almost 2 years ago. Hindsight is a wonderful thing, I didn't think to tell them that. He doesn't clean up behind himself, he does cook his own meals but these are usually ready meals. I told them how he put his dinner in the oven one night and then went to bed and also that he has blankets with more burn holes than blanket as he smokes and burns them. They asked if we've got smoke alarms, of course we have but Don ignores them if they go off as he doesn't realize that's what they are. They chose to ignore this!
All I can hope is Christopher and David don't just make flying visits as if they spent some time with Don they will see for themselves he has dementia and that I have not exaggerated Don's problems.
I feel very angry that these people spent no more than half an hour between them with Don yet tried to tell me he has depression, not dementia. I've been with him 24/7 for the last 12 years and I know they are wrong.
Just as they're wrong for allowing him to be left on his own for ten days.

Thought I'd do an update here as Don had his assessment last week, things deteriorated after my assessment as Don soaked pair after pair of trousers over the weekend as he kept forgetting to do up his catheter. As he still won't shower the smell was overpowering and in desperation I filled a bucket with water and shower gel and threw it over his legs to try to reduce the smell. He yelled at me that I wasn't getting away with that n he followed me into the kitchen where I saw him go to turn the tap on, I quickly moved away from the sink but he grabbed hold of me n refused to let me go. He smacked me across my head but still wouldn't let go of me n In trying to get him off me I rubbed some skin off his arm(this has happened once before when he had his hands round my throat and I grabbed his arms to get him off me). Unfortunately the water did very little to reduce the smell so I knew I had to do something more as it was intolerable so I emailed Jacqueline, the woman who assessed me telling her everything and asking if she could find out when Don's assessment would be. I then received a call from someone called Chris asking if he could come assess Don the following day.
It didn't go very well as he completely lost his temper, banging his hands on the arm of his chair and shouting that he doesn't need help, he can look after himself n he just wants to be left alone.
But Chris could see (and smell!) he can't look after himself. He is still wearing the filthy cream sweater I mentioned in an earlier post that's covered in food and port stains with the sleeves being black with filth. Chris didn't stay long, he said he's obviously not going to be able to reason with him today to which I replied you can't reason with him any day as he has dementia. He said he doesn't know what he can do n that he needed to speak to his manager but that he'd be back. I gave him my email address n he went saying he'll be in touch.
He then sent a test email to make sure the address was right and I replied telling him I'd spoken to Jacqueline about going to stay with my daughter and that my daughter had just told me she is on holiday from 16/25th April so her house will be empty. Going on the 15th will be easier for my cats as they're not used to children and I decided if nothing has been done by then I will definitely go.
At first Chris emailed back saying he was out of the office until the 11th and would email me when he gets back but he obviously changed his mind as he then sent another one saying he'd tried to arrange for the mental health team to visit Don but they are reluctant without Don's permission. So he said he and a colleague are coming on the 12th as the mental health team are questioning Don's mental capacity and his colleague, Helen is going to assess this. She won't be doing a full test as he said that takes more than one visit but he's hoping they will find a way forward from her assessment.
I'm certainly hoping so too but if they can't then my daughter will fetch me and my six cats on Friday. Both Jacqueline and Chris know he cannot look after himself, he admitted he wouldn't take his medication if I wasn't here and although he believes he'll be fine we all know he is deluded.
But if I don't make a stand then I've a feeling not much will change n after trying to care for him for almost 2 years I need this nightmare to end. I've had to quit trying to get him to shower as he became so aggressive and abusive, nothing I've tried has worked so I'm just having to grin n bear his horrific smell for a few more days. I've already packed everything except all the things that have to be done at the last minute, like cat litter trays, food n water bowls etc.
Oh yeah Chris also said in his email that he is going to contact one of Don's sons so he is aware of the situation. I'm pleased about this as I feel very bitter towards his family for refusing to become involved in Don's care. Don should be their responsibility, not mine but they have done nothing to help despite my pleas. I asked for a meeting with his 3 sons so we could discuss everything but they don't want to know!
I will post again after Don is assessed tomorrow.

I hoped that once Don is diagnosed with dementia then his family might become involved with his care and take some of the responsibility off my shoulders. His sons ring him n he tells them he's fine, if he was officially diagnosed then they would know he's not fine.
I had my assessment yesterday, it was done by a lovely lady called Jacqueline n she saw the state of his filthy clothes which told her he's far from fine. He asked her 5 times if he'd offered her a cup of tea and she agreed he's definitely got dementia. He also spent the first hour slagging me off to her which she told him is not on. She asked me if he's always been like this towards me and I said the old Don would NEVER put me down, he always used to treat me with respect but that his whole personality has changed. She also told him a few home truths about his lack of personal hygiene, that his jumper is covered in food stains, that he needs a shave, that his hair needs washing and cutting, his finger nails need cutting and cleaning and even that he stinks. He took it better from her than he would have from me although he did get aggressive a couple of times. He told her he showers every day when in fact it's almost a month since he last had one.
Right the way through the assessment he was adamant he will not allow anyone to come in to help him as he believes he doesn't need help. Then right at the end he changed his mind and agreed to allow it as we seemed to get through to him the detrimental effect this is having on me. Even so I'm still not getting my hopes up as he could easily change his mind back again!
I expected it to be a one off meeting but Jacqueline said she is coming back to see us again. The assessment was for me, she said someone else will come to assess Don, I feel it would have made more sense to do us both together but maybe mine got brought forward because I wrote to the MP.
All I can hope is that Don won't go back on allowing help. I told Jacqueline how I've considered taking my cats and staying with my daughter but I'd worry as Don needs medicating daily. He immediately said he doesn't need his medication and wouldn't take it. But he has hypothyroidism and DOES need it. He's also on Omeprazole which he also needs. He is adamant he would be just fine if I went but I know he wouldn't be. He put his dinner in the oven one night, forgot about it n went to bed. Jacqueline asked if we've got smoke alarms, we have but Don would ignore them as he has in the past. Another worry is Don has a permanent catheter which he forgets to turn to off. This morning I found 4 wet pairs of pajama bottoms in the wash basket but when I asked him about them he said he doesn't know what happened! His bed is soaked and so is the pair he's wearing which I've just told him to change.
So I've decided going to my daughters will be as a last resort only if all else fails.

Kaydi, what exactly do you hope will happen with a diagnosis of dementia? I doubt that they can take him away to a nursing home or force him to accept help in the home if he refuses to cooperate. I hope for your sake that I am wrong but I expect that as long as you are there you will be expected to be responsible for him.

Got an email today asking if tomorrow morning is ok for my carers assessment. So I'm finally gonna find out if I'm gonna get some help. Also had an appointment with our GP this morning but she was as useful as an astray on a motorbike in helping to get Don diagnosed with the dementia! She just kept on saying I need to get him to go there, saying to let her know in advance and she'd have all the tests ready including a blood test. But there is no way Don will go! And so much for writing a list of his symptoms - she didn't even read it! I'm praying the assessment will go better. Don is a mess, he's worn the same cream sweater day and night since 28th February and it's covered in food stains. Under it is his pajama top which he's had on the same length of time, no shower or wash so he smells real bad. Help HAS to be on its way as I can't live like this.

I received a reply from my local MP today and he's written to the Chief Executive of my local council, saying he'll contact me again when he hears further.
I also made a Drs appointment for next Thursday and have written a list of Don's dementia symptoms to show her. I don't know what she will do but I'm pretty sure she will agree that his symptoms can only be dementia.
I will post again when I know more.

He has said he wants to be left alone to die and that it would be a blessed relief but often what he says and what he does are two different things!
I agree that caring for him is beyond my capabilities, it's a carers job to see that he keeps himself and his clothes clean but I am unable to do either as he fought me every step of the way, becoming aggressive and abusive towards me. He goes weeks between showers and wears his clothes 24/7 but I now say very little about it. It's a carers job to see he gets exercise but he goes out once every 2 months to buy 1000 cigarettes and then he goes on the bus! He spends all his time either in his chair or in his bed although he does make frequent trips to the kitchen for snacks and meals which I make a point of not doing for him.
Yes it is stressful having to watch him self neglect and spend hours lying in bed every day but I can do nothing.
I put a lot of time and effort into getting our assessments with Adult Social Care, he refused his permission 4 times to be assessed but then said he had never refused and that he wouldn't refuse if asked! He said he didn't realize the calls from ASC were about an assessment! Finally last month ASC asked our GP to ring him and he agreed.
So I feel I need to wait for these assessments, ASC have a legal duty to provide help to cover our needs and my biggest need is to relinquish being solely responsible for Don. If they can do this then life should improve. If it doesn't then I'll have to think seriously about moving out. But if I move out there is no way Don can look after himself. He does nothing in the house and hasn't done since he became ill in 2014. He won't change his catheter bags, he can't even medicate himself as many months ago he twice took 4 tablets instead of one so I have to medicate him. He won't use the dishwasher or washing machine, last time he went out he bought his cigarettes but forgot to get the bread and coffee we needed and won't use a computer to shop online. He also forgot to put his trousers on when he went out, he normally wears them over his pajama bottoms but after he'd gone I saw he'd left them on the chair!
We see no one from one month to the next so if I wasn't here no one would know that he wasn't coping.
I've heard nothing from ASC about the assessments, I told them they are urgent, that my physical and mental health are suffering and that I can't continue caring for Don.
So yesterday I wrote to my local MP in the hope he will speed things up. I will update again when I know more.

I thought he had made it clear he did not want any more medical intervention and was prepared to die? Either if you are supportive of that decision, you are not personally obligated to be his caregiver as he deteriorates further. He needs to have his desires in writing and he needs to communicate them to his medical team and family. I think the mental and physical stress of caring for him to the end is beyond your abilities and could harm you, it is time for you to save yourself and find a way to bow out.

A quick update on Don. He's started over eating again but he tried to get out of bed today but said he feels too weak to stand up. He got back in bed for a couple of hours and hasn't mentioned feeling weak since. I tried talking to him today saying he should be getting stronger, not weaker and said something is obviously not right. Then I suggested he see a doctor and he immediately said no he won't as the doctors are useless. I said they saved his life 5 times so they aren't that useless. He didn't answer! If he continues getting weaker it will be his choice as to whether a doctor is called. The last time I asked a doctor to do a home visit Don refused to let him examine him, telling him he's perfectly fine, goodbye! The doctor had no choice but to go! Each time he's been seriously ill before he wouldn't let me get him help, one time the GP told me late Friday afternoon to ring an ambulance, he'd already told Don he had almost total renal failure and wouldn't survive long if he didn't go into hospital but Don refused to allow me to ring the ambulance saying he won't go in hospital at the weekend! Sat night he'd crawled up the stairs, unable to stand to walk up them. It took him an hour and a half to get to his bed where I found him on the floor asleep. He then spent an hour trying to climb into his bed but failed as he was so weak. He asked me to phone his son 1.30am to come lift him into bed. I had hoped he'd allow me to ring the ambulance once he realized he couldn't get into bed but he still refused. By Sunday morning he'd had no output in his catheter bag overnight and he finally agreed to me calling the ambulance.
If he continues on the downward slide I'll have no choice but to watch him deteriorate and it will be his choice whether he decides to accept medical help or not.

I got an email back from Mind but unfortunately they were no help at all, they just gave me links to the Alzheimer's site and another to their own site which I'd already explored. The only service that I can think of is for me to be re instated with another Community Psychiatric Nurse (CPN) as Don replaced the one I had 12 years ago. She gave me so much help and support which is exactly what I need right now. I will try to get a Drs appointment next week and ask if this can be done.
As for Don, he has been spending more and more of the day in bed these last couple of weeks often saying he doesn't feel well. My suggestion that he sees the doctor was met with a flat NO, saying he would only ply him with more pills! The last couple of days he's also stopped the continuous over eating he was doing so he's obviously on the downward slide. And normally as soon as I come upstairs to bed he's up eating, smoking and watching tv but tonight there's a blissful silence down there and no smoke polluting my air.
But I dare not to get my hopes up that this nightmare may be coming to an end as I've hoped before only for them to be dashed. I feel pretty certain that this is what he wants too as he often says he just wants to be left alone to die in peace.
Each of the 5 times he's been seriously ill he has always accepted medical help only when he'd reached deaths door but something tells me he has had enough and would willingly go through it next time. I just hope I can deal with the feelings of guilt for being unable to be a good carer to him.

Yes I think you're right as he's often said his death would be a blessed relief. And yes I admit it would be for me too!
And no, I live in the UK. A couple of days ago I emailed Mind which is an organization to help with mental health. I don't know if they can help but anything is worth trying. They said the reply will be within 5 days so fingers crossed.
Has anyone had problems with their caree smoking as I really need some advice on this?
With the help of e cigs I quit smoking in May last year as it aggravated the heartburn I suffer (caused by a hiatus hernia) but unfortunately Don still smokes and although he won't smoke when I'm in the same room I can't get through to him it permeates the whole house and rises up the stairs. He smokes 20/30 overnight starting as soon as I go to bed and although I keep all upstairs windows open, they only open at the top and the air quickly becomes foul.
Even when I was diagnosed in August with asthma with a reduced lung capacity he still refuses to smoke outside or even open a window downstairs. I often come downstairs to open a window/door in the night to clear the smoke but this is met with aggression and abuse with vicious words often being exchanged which help neither of us.
I have tried every way possible to explain how his smoking affects my sleep and my health but he takes it as criticism and replies by saying he's not listening, then putting his headphones on.
I feel overwhelmed with intense frustration, rage and hopelessness that builds inside me and has no outlet.

I don't know what's happening but my last two posts failed as it said both times there was an error. I'll try this one and hope it works.

I respect his decision to die, if he's of sound mind. But my concern is that he's taking you down with him too. You've put all of your eggs in the basket of him caring for you when he can't even care for himself at this point.

It's obvious you don't live in the US, so I'm not sure what services are available for YOU, but you need to start looking into them. You need some emotional support and also some support in paying your bills and managing your money. Are there services where you live to help you with those things? You need to start looking into those things now and not wait for him to get worse. It sounds like he's going to pass away before long, if he refuses help, but then what happens to you? You need to start getting your plans in order and get support lined up for that time. I also wouldn't count on you being able to stay in that house. Plan for the worst and hope for the best. So line up some other living arrangements and if you don't have to use them, great.

Hugs to you - you're a wonderful friend who has been supporting a person who is very, very problematic. I hope you can find some good support for you!

It sounds as if he has made the decission to die. When someone refuses help from the Dr and have a many serious problems as he does he may achieve his goal very soon. I believe in respecting that choice.

That's certainly food for thought! A few months ago I would have disagreed that I can't count on continuing to live here after he dies but I can count on one hand how often all three sons have helped in the past months and I now know I cannot count on them. At first they were there for him and me, fetching him home from hospital, taking me to visit him but this gradually tailed off with no offers at all the last time! They did continue to visit him in hospital though and I believed them to be a very caring family so it came as a big shock when they refused to help each time I've asked. I've gone over and over it in my mind, yes they've all got their own families and they all work and its highly likely they don't know how to handle the situation but he is their father and the responsibility should be there's not mine. I don't know how to handle the situation either! During trips to visit him in hospital they thanked me for all I do for him and said they realize without me he could not live at home. Unfortunately thanks to the dementia Don no longer believes this to be true and as he is now the only one I see I feel very unappreciated.
I have considered just walking out, going to stay with one of my daughters, leaving him unmedicated and with no care and see what happens but several things have stopped me from doing this. I have six cats who would have to come with me as he certainly couldn't look after them and I have no one else here who I could ask. And although both daughters have said I can take them (even though one daughter has a dog and two cats of her own) it would be no easy feat to do so with all the paraphernalia they would need and it wouldn't be easy for them either as they're not used to children or dogs. Yeah ok this probably sounds like me making excuses but my cats are my babies and I know I worry about them too much. We did get as far as doing a trial run once, my son in law fetched me and two of the cats for a day to see how they fared (not brilliantly!) but taking six would be much more difficult. Another thing that prevents me going is not knowing what state the house would be in when I came back as Don never cleans up behind himself, if his catheter leaked he'd trail it through the house and into his bed and he'd never lock up at night. And if I'm honest I did wonder if he would allow me back as he believes he doesn't need me to care for him!
As I said I don't know if he changed his will, I will ask him when I feel he is lucid enough to remember. If he didn't I do know he wrote a clause in the old one saying that I am to be allowed to live here until I die. Surely this would prevent his sons being able to evict me?

I wouldn't count on him leaving the house to you, and unless you have actually seen it in writing I wouldn't even count on being able to continue to live in the house after he is gone. His sons may be sweethearts, but they will see this is as their inheritance and you are merely an unrelated friend that their father helped out in her time of need. Better to look for alternatives when your living arrangements are still somewhat stable, if you are afraid now imagine how much worse off you will be after being served an eviction notice after he is gone.

Yes I agree Sunnygirl, caring for Don is beyond my capabilities, I'm trapped in a nightmare and can see no way out. I have no support or help from anywhere, be it with my own difficulties or in trying to care for someone who doesn't want that care as he's deluded into believing he's capable of looking after himself. He seriously self neglects, has gone 2 months without showering or even washing or changing his clothes which he also sleeps in, he never notices when his catheter bag leaks no matter how big the puddles in the house or how wet his clothes are, I found a full bag on the floor the other day but he wasn't even aware it had become unattached! I took over running the household when he became ill and he still does nothing to contribute now, he doesn't even lock the doors at night despite the fact we've been burgled 3 times over the years, he used to have a woman come in to cut his toe nails but stopped this around 3 years ago as "she fussed"! They haven't been cut since!
I emailed Mind yesterday not really knowing if they can do anything to help but feel anything is worth trying. I have no idea how long the wait will be for the ASC assessments and feel so scared that they too will have no solutions. Don would NEVER agree to going into a care home and while I understand his need to stay in his own home, this has only been possible because I live here too.
There have been no contracts but he has always said he's leaving the house to his sons but after he dies I can live here for the rest of my life. Last summer he asked me to get him a new will form as he wanted to change his will to leave the house to me, I think he said it would be better regarding council tax. He took the will form back into hospital after a visit home and I don't know if he changed it or not. Nor do I care as I was quite happy with it as it was, knowing I have a home for life is all I needed.
Yes I have thought that maybe I should ignore this and think seriously about moving out but the thought scares the hell out of me and I have no idea where I'd even start never mind whether I could cope living alone. I lived alone for 4 years after my marriage ended and did not cope well especially with bills and paperwork. Don has always dealt with those here, I assume he is still doing so and haven't thought far enough ahead to the time when he can no longer do this.
I just feel so totally exhausted all the time and know I'm not thinking very clearly. I feel strong resentment towards his family and can't believe they refuse to become involved with Don's care and needs, instead leaving it all to me. I feel so alone and dejected at the hopelessness of the situation and just want to wake up from this nightmare.

He has 3 sons who I always thought to be very caring, 2 of whom live locally but I have repeatedly asked for their help but they say there is nothing they can do! I also asked one of his daughter in laws if they could come medicate and check on Don while I had a break at my daughters but she told me to ask the district nurse to do it! I told her they don't do that and she said she'd speak to his sons and get back to me. She never has! I asked one of his sons for a meeting with all 3 sons where we could discuss issues but he told me he's not available until April!
I am agoraphobic, the only place I go out to is the chemist and local co op as I don't cope well meeting people I don't know and cannot cope with public transport. To get legal advice I would have to go into town 7 miles away and to be honest the thought scares me and I feel it's beyond me. My CPN helped me sort out my benefits years ago and I receive DLA and also SDLA. Maybe if I could have a CPN again she would help me to get legal advice? Would my GP help me to get another CPN? The GP Practice I was with for 30 years closed down a few years ago and the GPs at this practice have been as much use as a chocolate teapot when I've asked for their help. I have many health concerns regarding my friend, for example he's not had any follow up hospital appointments since his stoma reversal in June 2015, he's not using his glaucoma eye drops but hasn't had any eye appointments for about a year, when last in hospital in October he was diagnosed with hypothyroidism but no one was monitoring him and many more but all the doctor doctors at this practice just ignore my concerns. I even wrote them all in a letter to one of the GPs but this too was ignored! Only one, a locum took notice of me when I told him Don's bowel movements are exactly the same as they were before his bowel obstruction and he did a home visit to give Don a rectal examination but Don refused to allow this telling the doctor to go away! Oh it had been good to see that tunnel light!

With your conditions, caring for a very ill, dementia patient sounds very ill advised and impossible, IMO. You have recognized this too, thus your post. It doesn't sound safe for you either. Does he have family who can provide him with protection and care right now?

I would consult with an attorney in your area to see what legal recourse you may have. Perhaps there was a contract that you could recover from, even if it was verbal. I would explore my legal rights and also explore what benefits you may be entitled to due to your disabilities. They may be funds, therapy, housing, transportation, etc. I would not delay in seeking safety and legal advice.