Unpaid Carer in Crisis

This has to be one of the most painful things I have ever had to write.
   And if it is too long to read, I have tried to cut to point near the bottom.. Tried being the main word in this.

But it has been a long time comming, over ten years of silence.


Putting this into words is making me realise all the ways that this could have been avoided. Things that could have been done differently if I knew what I know now.
 
There is no training for this kind of thing and I know many will be in a similar state, even as I write  this because of teh complicated and evil proceedures put in place by teh DWP, UC and Councils.
 For those of us alone in the world, it is impossible to even fathom half of their rules. Let alone get what we need when we need it.


But hindsight is a wonderful thing.. if everything thing existed in a perfect world, we wouldn’t even have a word for it.


I am a soldier for the unpaid army of thousands.

A slave within my own home. Unseen, unheard and unknown.


One of the many who care for a relative to save the strain on the system.


Who get nothing in return for our years of service, to try to help the country, but scorn and spite.



Where to begin.


For the past 10 years I have been caring for my aging and disabled mother.


Her needs have steadily gotten worse. The debts have gotten bigger. Mobility, toilet, bathing, self preservation.


She is a long term alcoholic with C.O.P.D., Arthritis, incontinence and early stage dementia.


My sanity has slowly diminished and my heart has broken.


I suffer from high functioning aspergers, manic depression, adhd, ocd, synesthesia, insomnia, to name but a few



In the early years, it was me just running about, doing house work and trying to keep on top of all the things that she could not do.


I would pay a significant portion of my wages to the rent and household bills, not realising that she was also receiving a large amount from the local council to do just this.


She would always say that something or other had come up. That it was needed for the car. Or that her card was lost, or that she had ordered too many of something and would get the refund but needed the money to cover it and that she would pay me back.


And I would always say "Sure, here you go, don't worry about paying me back". Afterall, she had raised me alone. Fought for me when as a child I had been a.. well.. a child.

 Come on, we all did stupid things as kids.. some more than most.



So this goes on, and steadily, her health starts to decline.


She stops being able to go out as much. She can't walk far. She struggles with toilet needs. Bathing needs. social needs.


I pick up the slack.


I don't go out on a night, because she might need me.


I keep paying the rent, because I think I am helping.


I lose friends, because I am either at work or caring for her.


Family becomes distant and ties become strained.



Then.. April 2016.


She has been refusing to go to the doctors, the doctors refusing to come out to her. Her lucidity begins to decline rapidly, her mobility fails completely.


I am screaming out for help at any one that will listen, but because she can say "no", everyone walks away. No help.


Finally an old family friend steps up. We get her rushed into hospital.


Blood sepsis has set in.


Massive organ failure cascading through her body. She is still trying to refuse treatment and to escape. But by this point she is so weak that she can't even breath for herself.


We are told to say goodbye.


Friends come out of the woodwork. People I have not seen in years, all ready to offer their condolences and to offer some emotional support.


She pulled through. Even the doctors could not believe it. We are all in shock.


I beg for a meeting with the discharge team, I can't cope at this stage any more.


I can't function.


They don't listen and she is discharged into my care and I am left alone again. Nobody listened to me. Why would they. I am the mentally deficient one. This is what my mother had always told them. so it had to be true.

The friends all fade out. Back to normality we go.



So.. three months later. Her care needs are increasing. So is her drinking. They refuse to take her drivers license off her and I can't stop her from getting her hands on it. They say it's against her human rights for me to withhold it.


I continue to work. Upping my hours to nearly 70 a week to try to clear the debts that just keep growing. This goes on for months until I snap.


Something breaks. I stop functioning.


Depression. People claim that they are depressed and can still exist. Still function. In my case, I couldn't. I managed to just about take care of her needs, ignoring my own.


The doctors put me on every antidepressant they could think of, and they all had horrific side effects. From sleepwalking into dangerous situations. To seizures and random spasms that left me bruised and in agony.


But I still kept caring for her.


I dropped from 9 stone to 7 stone in just over a month.


I had to take sick leave from work.


Nearly lost my job.


And yet for her, I kept on going. After all. She had raised me. How could I not?



I recovered.. Somewhat, and kept on going. A year and a half later… it all came crashing down.


I have sought treatment for my conditions for years, but the NHS is neither equiped nor willing to help me. I may be suicidal, but I am not suicidal enough. But this time… oh how wrong they were. I did something very stupid. I rode my motorbike the wrong way into traffic.


It was not a conscious thought. I didn't even realise I was doing it. Until it was nearly too late. I snapped out of it, swerved back into my lane and pulled off.. And cried. For the first time in a decade I started to cry. Ten years of anguish and pain flooding out onto the pavement. I couldn't stop. I just couldn't keep going. There is only so many times you can be denied help before you lose hope.


I made one last ditch effort. A desperate call.


And the police were summoned.


My GP went into full swing.


It all seemed hopeful. But it was not to last.


I got one appointment with a psychiatrist. Who did not understand my conditions, and was told that they could not help me.


I was signed of work again and have been bounced back and forth between departments for the last 6 months. Having to repeat my story to more doctors and nurses than I would care to mention, because they are incapable of sharing a file between them.


I still had to try, through all of this, to look after mum.


Battling with Universal Credit, the DWP, council departments, doctors, social workers. To little or no avail.


Through all of this, I have been keeping the house going. Fighting with every ounce of strength I have, but I have non left.


Zero Hour


Then it happened.


She said she had a cold. I said, we need to get you to the GP.. just incase.


She refused. Day on day she refused.


Her health started to decline.


She said it was just due to the weather. Still refusing to go to the doctors.


And in the space of three weeks, she went from a grumpy old women, to a shell of a person. And in the space of 24 hours, she went from that to nothing more than a husk. With her every breath she refused help.

Because she was refusing help, they would not. Same story as the last.


Finally, I had enough. I phoned an ambulance and all hell has erupted.


In the ensuing chaos since getting her into the hospital, it has transpired that she has been suffering with pneumonia for the past month at least. She has pockets of sepsis  throughout her body. Mass fluid retention (Because she was refusing to take her medication, or hiding it). She has fluid on her heart. 5% lung function. Kidneys are packing in. Liver is shot.


She is alive.. Just. Forced ventilation is the only thing keeping her going. Not to mention the multitude of drips and I.V’s of every colour and flavour.

I am begging for help from teh social services, and what little help they can offer are only words.


We live an hour away from the hospital. There are no busses. They’ve already taken my licence off me and I am having to live off the charity of old family friends To get to see her, and that will wear thin very soon.


In the frantic rush to get everything in place since she has been hospitalised, I have finally managed to get a full scope of how bad the situation is. She has debts that she has been sitting on for years.

 She has MY post that she intercepted and hid along with her own, buried into old phone books and hidden behind furniture.. Even in the inside of the damned sofa.


She has borrowed thousands of pounds from her friends and then cut contact with them. All in the name of feeding her alcoholic habits. She has stolen from me to the same end. I have ruined my credit rating in order to keep the roof above us, so I can't even take out a loan to help us out.



I have nothing left to sell, except the computer that I am currently writing this up on, and if that goes, I will have lost all contact with the outside world.


And even the internet is better than nothing. I can tell you how cold you feel when you are left alone in silence.. I can tell you how much it hurts.



Ok.. So I have rambled on for long enough.


Long and short of it.

  Long time carer left destitute by the one they are caring for.

  Medical emergency costing an arm and a leg in transport.

 Mountain of debt hidden by mother with dementia.

 Council are as much help as a dead duck.

And I am desperate.

Oh.. and to top it all off, I work for Carillion Aramark… yeah… just let that little nugget sink in. I don't even know if I will have a job to go back to.

So yeah, life hasn't run out of lemons to give me quite yet, and I tried making lemonade.. I just suck at it.


Asking for money.. I hate doing this. It feels like I am begging on the street, but that is what it has come to.

I have no option but to beg.

This money will go towards clearing the debts and sorting out all the carnage that has come to the surface since this has kicked off.
This has all been dropped into my lap.
 
It will not even cover half of it, but it is a start.

It will ensure I can be at her side in the hospital, because, despite all she has done, She is my mother.

I may not always like her, but love is unconditional.


If, by some miracle, she does pull through. The money you give will help us get a clean..ish start.

It will give us some breathing space.


To any who have read through this.. I really am sorry, I truely am.

If I didnt get this all out in the air, I think I would have self destructed.

And if any of you do decide to help me with this, I cannot thank you enough.

Getting even a portion of this cleared means I will be able to sort out her affairs and get things moving for.. Whatever may come, it means I will be able to get to see her without haviong to beg for people to give me a lift, or attempt to hitchhike again.

 It will mean lesst stress, less paniking and maybe, just maybe I might get a chance to sleep.


Thankyou for reading this, I know it has been long winded and rambling, but that is the state this has left me in.


Charles