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Blurred lines of where I stop and someone starts - Carers UK Forum

Blurred lines of where I stop and someone starts

Tell us a bit about yourself here.
Being a carer myself it's struck me recently how you are put in a situation in which you rise up and anticipate the needs of others for a prolonged period and then those needs lessen for a period. I am struggling with the reality of that as it's like it falls onto you out of nowhere and you have to combine it into your life and operate under extreme pressure. But as soon as the crises point reduces (after a prolonged period) you have to step back. It's like you become aware that you are actually invading the independence of the person you care for. And yet there is not an 'on and off switch' that signals this.... and yet being a carer it's like you have to have the on and off switch inside yourself but life doesnt work like that. You get swirled up in filling in the gaps to support the individual who is suffering and unable to operate on their own. And then you have to pull back when that individual starts to be better for a short while. Your life is sweeped up into another's and yet your life still needs to be managed but it suffers too. It is like constantly being in the swirls of an ocean when a tsunami strikes and then it settles until the next tsunami. However even when there is a lul, the inbetween times never completely become free of carING it's just the demands are lessened. This is one tough journey to be on especially when you lack a proper back up for yourself! :-???
Both sets of parents lived less than 6 miles away from us. Sadly, in later years, my husband said we lived too near them. They all pretended they could cope, refused services, but kept ringing us. We ended up calling ourselves "Thunderbirds" ready to jump at a moment's notice. Sadly, my husband died soon after his dad from a heart attack. I shall always believe he tried too hard to do what they wanted. I developed serious health problems too.
Can I ask who you care for, age, and disability?
In many carer / caree situations , some are " Joined at the hip " ... one cannot exist without the other ... a protocoopertion relationship ... particularly encountered with elderly husbands and wives ... both , perhaps , in their 80s / early 90s ... both disabled and yet caring for each other.

During my stint as a lone , 24/7 carer , I often used the phrase ... " Being chained to one's caree " ... apt for far too many carers ?

Every combination of a carer and caree relationship is different ... a " Happy and /or workable " relationship is very much a case of trial and error.

When in a partnership with one's caree ... as every carer / caree relationship is ... very difficult for one to gauge when individual needs outweight the overriding partnership ones.

Finding a solution for one partner often leads to a problem for the other.

Individual v. partnership needs ?
I am on a "lull" at the moment. At the moment care is well managed and we are doing OK.

Prior to this a crisis could occur at any moment.

I know that crisis point will be reached again as both my carees have degenerative illnesses.

However I am really trying to enjoy the lulls. I think being a carer has taught me to live in the moment and enjoy every second. A hard state of mind for me to reach tho!

What is your situation? I care for my Mum and Dad in their 70. One now in a nursing home and one at home with dementia.

It's extremely tiring being endlessly 'responsible' for another human being....wears you down.

To my mind, it's about 'loss of control'. ie, the caree calls the shots by their needs. WE, the carers, are NOT in control of our own life.

That's extremely stressful.
My mum is in hospital at the moment so one would think I'd have more free time than when she is at home. Not so as the hospital has bad reputation and we've experienced unacceptable 'care'. The latest was healthcare assistant telling me that it was not her job to get mum a cup and water jug. I've had to fight for a recliner, only 2 per ward- this is a large hospital in London. Now it's a battle to get these assistants to put her on the chair!

I understand that even if there's a lull in care requirements, you just can't switch off AND resume your other life. You're in limbo.......
Couple of really good comments just been said - "we are chained to our caree" and "not in control of our own lives". That has just hit the nail on the head. My husband had a bad stroke four years ago and is now bedridden but it's as if I had the stroke as well. He cannot be left alone in the house for more then about an hour. He gets anxious and tries to get up which can result in him falling. I am definitely chained to him.

I have no life of my own now, everything revolves around his care. I have to be up and showered before his carers come in the morning. Some mornings even if I don't feel well, I still have to get up and see to him. My home has been taken over by carers and disteict nurses who treat my home like a hospital ward which I hate. I have no privacy any longer.

I would love to have my life back and be "in control" once more.
Irene, I share your predicament of being the nurses' and paid carers' assistant. You have to get clothes, towels, hot water, breakfast ready. One set of carers wanted the meals ready when they came, rather than when we would normally eat. I could go on.........

I don't bother getting dressed for them anymore.
To each of you who have taken the time to respond and give some of your time to support and share, I want to thank you. Reading your posts left me with a mix of feelings...some nodding my head in agreement, some my heart goe's out to you and even some made me smile at the harsh reality we and so many others face.

I will be honest and tell you that I find it difficult to fully explain the situation I live in. I am a daughter. My mum is my main caree. She has a combination of medical issues which is why the explanation is hard to find. My dad is within the family home but has a comittment to someone else which blurs the set up somewhat! Another reason the difficulty in explanation. My sister lives abroad and rarely visits or phones. My dad and sister have a life set by their own needs and come and go as they need. It doesn't help that I had to go through a harsh reality at 18 when I almost lost my mum to massive strokes Leaving her permanently affected.

I faced my own serious health problems over the last 5/6 years and my mum was there when I needed someone the most and a support and understanding friend to the way it affects my life. She is my best friend. The dynamic is ever changing and particularly so now....

I hope that explains some of me but it is impossible to truely give a full picture as there is so much more to the picture.

My frustrations are so upsetting. We had a good few hours yesterday and to see mum able to enjoy almost a normal day was golden - the sun shone too! :)