update from chris the poet

I am terminally ill and dying I have COPD meaning my lungs are gone, also MND motor neurone disease which is killing me daily plus, a small cancer growth in my left back plus a right front hernia plus a broken right foot

After celebrating 35 years of marriage two weeks ago my wife has thrown me out of the home because she cannot cope with me alone the pressure is so great despite our ongoing pleas too social workers for help regarding additional care

I have never seen a social worker since this despite my persistent request to see the director or deputy in person; such is the deliberate ignorance and blatant arrogance of social services

We had already complained to the director of social services about the two members of his staff our complaint mainly fuelled by my wife. The complaint was in reference to me being ignored repeatedly and the social worker persistently letting us down as they had ignored my desperate plea for help, so much so that the senior actually blocked my emails, fully aware it was the only way I could converse which is beyond all human rights

Yet all this was over is that my wife came in from a late shift and found the new recliner chair and the wheel chair both in the living room, which she got very angry about. Which yet again reflects the total and absolute lack of support offered us

She assumes I can walk about the home with my broken right foot that she actually broke last October trying to force me to sit down; sadly the mnd stops this healing, as also sadly in my wife’s opinion there is no room in the home for my disability.

My wife has never physically assaulted me and I want that made very clear verbally yes

As for the social workers endlessly telephoning my perfectly verbally active wife and ignoring her very ill dying husband is beyond every bit of belief grasp and understanding. This is possibly because they neither have the time or patience to hear me or they view me as having a mental deficiency which is totally incorrect, as shown by the way both have treated me, or because they believe her when she persists in saying to one and all that I abuse her which literally any doctor will relay is literally physically as verbally impossible, she says this as her pleas for help which is again unheard as unheeded by all

Both social workers are absolutely determined to see me go into care which I absolutely refuse point blank to do, be that council or private run. They are deliberately putting meetings off till as late as they can in the hope I will lose the power to communicate to as such then forcibly place me into care

I refuse under the grounds that I will be left to rot and die lonely and alone and would die of neglect

Two nights of the trot without any visitors got me thinking this is what happened to my poor wife left on her own to struggle and cope alone without any support from a single sole at all

And it will happen to me again once I am left on my own if placed into care left to be neglected abused and die very painfully lonely and so alone unable to speak up for myself

This is why my wife was good for me because despite her moods she was always there for me regardless, but social services abused her being always there for me and refused us any extra care point blank, other than three separate hours daily which is no good to any one

If there was to be any abuse I would rather it were from someone I knew and loved rather than a careless and complete total reckless stranger in a care home I did not want to be in

I know at the same time that my family each and all have their own lives to live, and that I would probably be no different hence it’s a lot to bear for me and is one of the main reasons I refuse point blank to be put into any form or kind of care home be that private or council run, to be neglected and abused by staff and unable to speak up for myself

As for the meeting to do with the care package it was held about 8 weeks back and supposed to be reviewed two weeks later

It is extremely annoying to find that because my wife threw me out the social workers agree I can have everything social services have, as they have no lawful right to interfere in my marriage either, which I object to very strongly and any person or department will find themselves in a court of law as national press and medla

So you are saying you'd rather know you are going to be abused and ignored by someone you know instead of the unknown? I think I'd take my chances Christopher with Social Services. Maybe your wife and family will spend more time with you if they're not your caretakers and maybe you'd be better taken care of in a facility. Just something you might open your mind to.

Your wife seems overwhelmed by everything. It's the same here in many ways, if you have a home, even just a couch in someone's house, then you don't get your name on the list of homeless... toss you out into the street, you're #1. Is that a factor here?

Honestly, I'd rather go into a facility where the caregivers are professionally trained, and relieve the pressure off of my family. I can say that now, because I'm not in your situation... yet. It also sounds to me that other options were offered and rejected by you... did your wife have ANY input in your decision? She's in this with you, did you remember that? Not to be harsh, I only know what you've said, but there are other sides to the story, and maybe you're not your best advocate right now.

I hope this gets fixed for you soon, I'm so sorry you're in this spot right now.

The first time I read this I was afraid to comment. First of all let me say I have been a caregiver for my mom they were four of us and we stayed six nights in a row. My mom was was not a demanding person but it was hard, really hard finally my sister decided she couldn't do it any more my niece was the RN in the Nursing Home so we were lucky. What I am trying to say is your wife has it every day and from the way you write I bet you didn't show her any appreciation for the what she did for you. I am not a perfect patient but I try to be considered of him if I can, I wait for him to get up before I ask him to do something for me and I try to thank him. I know he doesn't have to take care of me and I appreciate what he does. I knows what he does is really hard and it's everyday.

christopher poet, if i was your missus i would throw you out.......shes working and taking care of you......the social servises in britain are the best in the world and all you do is whinge.....if i told our american friends what benifits your on were would you think there sympathy would lie......johnny

Johnny, I love how you always say it like it is... I think trfogey would be pretty blunt as well if he were still with us.

Anyone alone and desperate does not know Jesus the Lord of All. All you have to do is to call on Him. He knows you better than a brother and hears your prayers. Do not let Satan deceive you into believing you are alone. Ask the Lord to reveal Himself to you. He is no respecter of persons and knows the hairs on your head. Just ask. He has always been there for you. Do not waste time in this you may not have it to waste.

well.....that was cheery. I was also afraid to comment but I agree with johnnyliverpool. I've read posts on here about people not being able to afford medication or care. Here in the UK everything is free to anyone who needs it. My aunt wanted for nothing and her meds were delivered to her door before she went into a hospice where she received round the clock care from excellent staff. Poet Chris, you sound very bitter and angry, also depressed. Understandable given all you have to deal with, but maybe you should also seek help with your emotional problems as well as your physical ones. People are trying to help you but you seem determined to fight them every step of the way. Try meeting people half way. I doubt very much if you will be left to rot and die of neglect. I hope your issues are resolved and you will be comfortable and settled somewhere soon. By going into care the pressure will be taken off your family and maybe you will be able to spend some quality time with them which is important for everyone, especially you.

I've gone to moderation....
Johnnyliverpool - you're right.

christopher,i am so sorry to hear how bad things are for you and i really hope there is a solution asap.

however i do agree with johnny and can not understand why social services are not doing more to help unless thre are issues you have not told us about.
we do have alot more support than those in the usa........better benefits,free health care(though not always perfect)
we also have council accomodation..........some like notme find themselves homeless or having to live in terrible conditions,we can get a disabled adapted home from the council for a small amount of rent like me.

while you do hear some horror stories of nursing homes most are very good,i do think for your needs it would have to be one that is for the very ill and disabled rather than just for aged.
look into the local hospice,these have very very dedicated caring people and specialist help......maybe not for now but later on.

how your wife can work and then come home and look after you is amazing,most people could not do that so its no wonder she feels burnt out at both ends.
................and christopher,while your still alive you are living with mnd not dying.

All I can add is that you will be eligible for CHC - continuing health care, and with this you can get an agency to provide staff to look after you at home, as well as some night sitters.

Most UK based people with MND on other forums we have 'met' are in receipt of CHC. Because your experience with social services is so bad you can transfer your care to your local hospice care team, they will be able to get the ball rolling with the application and assessment. They should have their own social worker, as well as the OT and physio.

Good luck. Dani

Poet Chris - Very sorry you are having such a dreadful time, but it sounds like some of your difficulty is self inflicted. If you have any feelings at all for your wife, remember that she must survive after you are gone. If you were wealthy, I'm sure she wouldn't be working as well as trying to take care of you.

I've been in your wife's shoes. The day I had to send my father to a care home was one of the worst days of my life. If he had been willing to accept help available through social services in this country, he would have been able to stay at home much longer. Instead, when the social worker came to interview him, he told her to "go piss up a wet rope." End of interview.

As others have said, please open your mind. Unbearable stress can cause people who love each other to say and do things they would never dream of otherwise.