It’s so difficult to cope with a condition I know will never get better.
To carry on being me with ME.
I love easily, I help beyond my capacity, I forgive endlessly.
I do those things because of who I am. Who I want to be but …
Doing so is breaking me.
I need to learn not to volunteer, to say no, to not care when someone acts let down by my decisions. I need to stop wearing my heart on my sleeve, to make others prove their value of me before I keep on giving.
For maybe the last dozen years I have just been on a destructive path. Trying to do the right thing and being taken for granted for it.
Agreements of any kind made to me have no value, they are taken back when the giver changes their mind no matter how sincere the promise felt at the time.
To cope with ME, alone, I need to stop being me.
By the way, if you don’t understand the title is about my condition, you don’t know me well enough to matter or, you don’t care enough to remember.
It is absolutely impossible for me to rest, never!
I honestly feel that I am involved with Zoey’s care 24/7, like, anyone can contact me at any time with an absolute screw up of their own making and I will deal with it.
Social Care have made so many screw ups it’s just awkward now. Despite the mess they’ve created it’s still the same people making the mistakes who are running the shit show.
One crap care provider after another, each competing with each other to see which can come up with the biggest bullshit to explain why they’re not managing her.
No one, not a one of them, ever has a clue what might be going wrong, it’s sickening. It’s like they are just not there. Sure, they know about the damage Zoey causes in great detail but, not what is actually upsetting her.
You know, Zoey was previously abused by her carers, years ago now. Sadly, any carer who looks like them seems to be a trigger and yet, because looking like them refers to their colour, she is told to just get over it and she keeps getting these triggers but, their hands are tied as they are not allowed to mention this could be a trigger!
I said to them, if she had been abused by a male carer recently, is it OK to say ‘no male carers’ and the social workers said that, of course, that’s OK!
Let’s look at the definition of the groups which cannot be discriminated against:
Oh dear, apparently, gender is included and, as such, social care cannot discriminate about a man but, they say they can.
I wonder, are there any provisions whereby any of the above can be a factor when engageing somebody to work with a vulnerable adult? I would think that, if social care feel a man can be but, someone non white can, there must be such a provision so, is there any workaround?
There are some instances where patients are discriminatory that should be dealt with differently.
These can be categorised under three headings:
When a patient’s behaviours are linked to an underlying condition or pathology e.g. mental health illness, dementia.
When the behaviour is from a legal guardian of the patient e.g., parent of a child or person who has power of attorney for a patient.
When the characteristic of the healthcare worker will affect the physical and mental wellbeing of a patient e.g. requesting a specific gender for a personal or sensitive care, or psychological treatment.
Apparently, there is something which could be used here but, they cannot use it until they acknowledge the previous abuse. Once that is acknowledged they can then state that because a certain characteristic is likely to be a trigger, those who have that cannot work with Zoey.
The bottom line is, for the second time this week, in the middle of the week I am sorting things out which are the responsibility of others because they either do not want to or, don’t know they should.
Friday afternoon, I have another online MDT. I don’t really feel inclined to attend to be totally honest. By no accident it has been arranged just in time for everyone to go home and enjoy their weekend. It is, therefore, really just a tick box thing, we did it and let’s just cross our fingers and hope nothing happens over the weekend.
Anyway, right now, Zoey is under arrest somewhere in Kettering. Because someone employed by social care said she has capacity they had no interest in whether she might need her LPA, they would deal with everything themselves. The phone call was so short as to be rude. Well done social care for that.
There is no outcome from this which is going to be good for Zoey. Everyone was told to do a proper risk assessment, they didn’t. Same as the last lot and the lot before that. This is crisis managment on top of crisis management.
Were I fit and well, I’d be a lot more affective, just now, I don’t have much left to give.
From 8th May for at least 5 days I have to give notice that whilst I might be available for social occasions I am totally out of bounds for any assistance anyone might need.
This includes but is not limited to, driving, IT support, Interior Design, cooking and so on.
I owe it to ‘me’ to take the break, get myself some sanity back!
When I get to the point I struggle to remember my address and fall on escalators, it’s the time to stop!
I have strong feelings about this and a reason for why.
My parents got married in the 1950’s I believe. Toward the end of the late 60’s mum developed rheumatoid arthritis and it got worse and worse.
By the 1980’s mum really struggled. Dad wasn’t keen on taking over and mum frankly, wouldn’t have wanted that. However, certain aspects of their marriage had long since ended as mums level of pain rose over time.
On one occasion dad randomly started a conversation about toilet use and during it he made the statement, in front of mum that “to be honest, a good shit has always been better than sex with your mother”. That was his kind of humour but it’s a humour I know mum never got used to and I didn’t also. That comment really upset her.
in Late 1985 mum had to go into hospital. They took her in as much for a complete rest as anything else. However, on this occasion during usual visiting I noticed some weird shit happened with the fuel and mileage of the car I shared with my dad. I would not have noticed had he not begun to complain I wasn’t putting in my fair share. I discovered that each time he visited mum at the hospital and extra 40+ miles got added to the odometer in the car more than the journey actually took. As it kept happening I got out a map and drew a circle covering the additional distance. The conclusion was quite clear, he was meeting someone and not only anyone, he was meeting my aunt, one of mums closest friends.
He just randomly came out with it at Tesco one day when mum was still in hospital. I cannot recall anything relating leading up to him just coming out and saying “So, you know I am seeing Kath, don’t tell your mum”.
I said that if she didn’t ask I would say nothing but, on the contrary, any question she did ask I would answer honestly. Sure enough, within 24 hours she had asked me outright if Dad was seeing Kath. I told her what I knew.
Her heart was broken. She told Dad to go that Christmas of 1985 which he seemed to do willingly moving in with Kath. Some six months after that, after giving up on life, she died at the age of 52.
From that point onwards my life was devastated. Most of my closest family members I lost as they started to take sides. I was deemed to be on Dad’s side just because I had the surname and resembled his appearance. I totally was not on his side so I was just left in limbo right at the start of my own marriage and the birth of my eldest son.
A few years later I did ask Dad outright, why? His response sticks with me and prompts this blog post.
“I gave her the best years of my life, I got nothing out of the relationship after she got ill and I would have got less for murdering someone, I was entitled to a life too.”
Looking at the promise he made to mum, was that right or fair? I can see at least two broken promises and the other was relieved to boast about that she was dead so death had parted them!
Now, we have a friend who is from another country. The man to be her future husband contacted her, was very open with her, gave her all the information of a degenerative condition he had and what it might mean for her but, despite that, she agreed to marry him anyway.
Less than 20 years later she was complaining that he expected too much, wanted her to wash him, sometimes feed him and look after their kids. She left a few times going back and now she has left for good and also washed her hands of her kids neither of which are yet adults but teens. She is proud to boast she called one of them a prostitute for what she was wearing and content that her daughters regularly took over with their dad including bathing when she opted out.
Her parents she says, have turned against her saying she should have stayed and honoured her marriage and, of course, she disagrees, she’s ‘done enough’ which, to me, sounds all too family.
It worries me she has any influence in my own marriage. As my own condition gets worse I am terrified that those like her will persuade my own husband that I expect too much and that the marriage vows do not matter.
Now, to come clean. I used to be married to a lovely lady. I got married because in my life I had been convinced it was my only option. That living a life with respect to my own sexuality was not a choice I was ‘allowed’ to make. I had explained to my wife about my sexuality and I did try really very hard to ignore my dominant side of being gay, indeed, my only side. Eventually we did agree after around a decade to slowly, at our own pace, move away from our marriage. Live together but separate lives. Within 5 years it became apparent that this was not workable and we agreed to divorce. She knows that I remain there for just as I promised. Sadly, this was one of those occasions whereby marriage should not have been an option for us. Glad as I am that it was because of the experiences and the children but, this was not the honest life either of us should have lived and we remain good friends.
Why is it, I have to ask, that people are prepared to spend £10’s of thousands just to say those wedding vows *promises and yet, they mean so very little with them thinking that when the going gets tough, the promises don’t mean anything?
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