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Many of us are carers now and so this category is for carers to share their thoughts and experiences

TOPIC: Moaning

Moaning 5 months 2 weeks ago #3102823

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It Isn't just wishful thinking.;)

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Moaning 5 months 2 weeks ago #3104850

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I was referring to someone in government Weatherpoet, I am aware that there other initiatives being undertaken to assist carers but I think it will require an effort from government to bring those initiatives together and make them work nationwide.

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To be born Welsh is not to be born with a silver spoon in your mouth, but with a song in your heart.

Moaning 5 months 2 weeks ago #3105632

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You are entitled to your life too Elaine so don't worry about saying how you feel. People who mind, don't matter, people who matter, don't mind.

Like other posters have suggested, get as much help as possible and know that there are many members on here who either are, or perhaps, have done similar caring roles so don't be afraid to reach out to them.
The following user(s) said Well Said: welshlion, elainexx

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Moaning 1 week 3 days ago #3215018

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Moan for today...
What do you do when the person you care for doesn't get time to eat meals you cook for them for days on end so you end up throwing them away before they're stored so long they run the risk of food poisoning?
What do you do when they don't find time to take their medications so you're on the receiving end of daily verbal abuse in various forms?
What do you do when you can't use your own toilet because it's constantly occupied with the sound of snoring and they refuse to move so you have to use your own "makeshift" toilet? Good thing I'm not a woman!
What do you do when you're constantly sleep deprived because their routine is all over the place so they keep you awake every night until the early mornings?
What do you do when they can't find time for personal hygiene so they go weeks without a bath?
What do you do when you're faced with all the above alone with extremely little support?

Answers - you contact the doctor, the mental health team and your carer support worker telling them all the above and what do they do?

You've guessed it - Nothing.

So then what do you do?

You leave home and force them to take over or do you stay with the sinking ship and try to survive so that one day you can tell your story of the years of neglect and lack of support, and the constant fighting against all those who are supposed to be providing help and support.

I feel like I've gone back 30 years in time to the days when we were married at 30 when we were forced to survive alone with no support from anyone until I became ill myself from the daily pressures of trying to work and being a carer as well. You would have thought as years go by there should be progress rather than going backwards to the stone age because of the cuts and lack of resources for those in need.

I guess we only have one choice - keep fighting and try to keep sailing through the storms in the hope of one day finding a tropical island where I can lay on a beach relaxing with a friendly native where only daily caring, understanding and compassion reside. If we don't have a dream to cling to, there is nothing but loneliness, stress and misery as our daily companions for eternity.

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Moaning 1 week 3 days ago #3215072

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Good Morning Weatherpoet

Professionals dont know what we're going through, because Nobody can,
Professionals don't know how to help us,
Because Nobody really wants to help its just a job to them.
The only real support seems to be self help groups, I have gained more support and laughed more in the last month since i tapped into that community than I have in in the last few years.

So fight or flight Cling tight to that dream your amazing x
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Moaning 1 week 2 days ago #3215672

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Thank you Elaine, that's very kind of you.
It's strange how on the surface everything appears normal so that anyone saying hello would think everything's fine until they see examples where everything definitely isn't. It's like sinking into an abyss with a smile and not realising it because you get so used to living an abnormal life when others would say it's crazy. You just get used to it.
For instance, I'm so used to having to use my own makeshift "convenience" that's become second nature. I even make a habit now that when I'm out visiting somewhere, I make sure I "go" before I leave because I can bet I won't be able to use what I need when I get home. If you say that to people, they say "What?!" but to me it's become just the norm just like being up all night because I'm not allowed sleep. As you say, people have no idea what life is really like behind closed doors.

When my mother was alive I used to tell her what life was like at home but I don't think even she could really imagine what life was really like until we lost my father because then when she was alone she would spend a whole day here. I remember her saying "Now I understand what you meant" because then she was having to adjust her own plans to make sure she didn't get caught short when visiting.

I know it's crazy and you would think that someone would consider another human being but it would mean losing my temper every day and still being accused selfish for not considering that they are ill so can't help sitting there asleep for hours on end. I reserve that temper for when I get desperate and find myself in need of using a carrier bag to leave outside the door but so far I've managed to hold on long enough. You wouldn't believe the advice I've received either from so-called professionals suggesting I ask a friend if I can use theirs or compromising with a plan so that I can use it between certain times (woof!). No, I'm not a dog,

One of the problems I find is you want to tell the world to open peoples eyes to what life is like for those in our roles but you feel you can't be too open because of stigma, people not understanding and wanting to protect those you care for from everyone knowing how their illness affects them because it's private even though it causes so much distress to the carer who already feels trapped and alone.

It does seem these days the professionals are being trained to find ways not to help rather than ways to offer help unless it's an absolute emergency. It doesn't matter what field they're in, they all seem to be learning from each other. Humanity appears to have forgotten how to be human. It makes me wonder would they treat their own kin in the same manner!?

I do exactly the same as you and mix with other carers, and like you, we laugh at how we're all treated rather than break down in tears because we're left struggling to cope alone. How many times I hear on the News that people are shocked when something bad happens because a carer has been left alone 24hrs a day to cope with a serious illness, and I'm left thinking, why are they shocked? You only have to stop for a moment to picture what life must have been like for them and you wouldn't be shocked. Constantly we have to fight for everything because nothing is ever offered. The best tips I've heard are from other carers who share what's available because the professionals never tell you because for them it's a guarded secret meaning to off would cost them money.

Years ago I nearly ended up taking my own life because I felt so alone with no one to turn to. I felt like walking into a supermarket to see if I could buy a hug off a shelf or asking the surgery if they could prescribe a weeks supply for me. Instead I turned to other means to find comfort to dull the pain of life until a hospital doctor warned me that one more would have been it. I was even told by a nurse (I do greatly admire nurses) to think of the person I care for and by a doctor that he had genuinely ill patients as if I was just a waste of his time. It didn't matter what I did or who I turned to, it was the same story despite day after day having to lock myself in the bathroom to escape the bombardment of irrational questions and accusations.

Things are getting as bad again because of pills not being taken and once again I'm shouting for help but so far no one has heard me or even worse, just ignored me. The only difference for me is that instead of imploding as I did then, I'm prepared to take them all on as I have so many times since those dark days. I might as well go down fighting than finding a box of pills for myself as I did then. I cling to that dream that just maybe there is an angel out there with comforting wings because in my mind she is my hope and the thought who keeps me going. I'm not old or even look my age they say, I'm not overweight, I'm still fit and go for lots of walks to escape my ball and chain at home but it doesn't matter where I go, I'm always alone. I just cuddle our little dog when I need comfort and she loves it. At least I can talk to her without having a backlash at everything I say. I'm not abused by her.

I do try to think of all the things I should feel lucky to have and in many ways I do feel lucky despite life at home. I do try to help as many people as possible and there is still a lot more I want to achieve. I do feel though I'm always giving and never receiving. I was thinking today it almost feels like I'm in this situation for a reason but it still isn't clear to me why. In life we have to make so many choices and each choice takes us down a new route like the roots of a tree. From one bad choice we can end up in a completely different place to where we hoped to be but we can never turn back time or look into a crystal ball to avoid those mistakes. Maybe the reason is life is already mapped out for us and the traumas we suffer were pre-planned to test us on our journey through life. Or maybe it's just pure chance what life forces us to experience. A fortune teller once told me I would always be unlucky in love and so far I can't try to find her again to tell her she was wrong. I just wish she had also told me not to make the mistake I have always regretted though my own weaknesses by not being able to say No back in 1990 because otherwise I might have found a kinder "root" to travel through my tree of life. I know...I should write a book...maybe I will one day on how the system always ignored us.

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Moaning 1 week 2 days ago #3215742

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The system is broken its full of business people trying to stay within a budget! On the surface carers look ok because thats the face we show the world underneath were all paddling like crazy to stay afloat no one see that because until we're drowning we get good at hiding it .
I suppose my situation is different to you in as much as my husband wont let me out of his sight wherever I go he goes too because god knows what will happen if I cant see him we had several incidents in the early days that could have been very dangerous i-e going out and getting lost or trying to do something hes not up to and injuring himself no logic at all. I get up between 4&5am just to be alone its the only time of day I can be.
We had some good friends who when I had to tell them my husband has Dementia and Parkinsons they said "what are you going to do" I didnt understand the question because it never occurred to me there was a choice to make that was mine, this is my husband I will do what I can to guide us through this maze. Their reaction was to tell me how brave I am to stand by him and tell me their full of admiration for what im doing! Like walking away was ever an option wow. Right there I understood if close friends didnt understand how could a stranger in the system
I dont tell people we meet friends or strangers that has led to some strange conversations lol but they can work it out themselves but they wont get a chance to have an opinion on my husband from me.
It is really hard because no one understands and nothing we say will change that.
Stay strong carers do make a difference to another life even if the person your caring for does not realise or understand that my husband does not understand Im safe guarding he gets abusive because he thinks im just stopping him from doing something he can do!.
Carers need to stop being made to feel guilty we re doing our best I have learnt not to spend my days reminding him what happened if he thinks we rowed and we didnt I apologise and we move on because if i dont were both stressed.
Take care of yourself
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Moaning 1 week 2 days ago #3215783

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Carers save the Government a huge amount of money, to put a person into residential care would cost much more money,than what carers receive.
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Moaning 1 week 12 hours ago #3216901

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Things are on the verge of becoming critical for us so now the professionals will be intervening. I fear we'll find out just how broken the system is. I worry how I'm going to get through this long weekend if I have to listen to what I've had to listen to today. It takes me back years to when I used to have to lock myself in the bathroom just to escape the irrational questions and statements.

I just hope somehow things can be mended before they have to start again. It feels now though that you have to reach a point of being completely broken before anyone will attempt to put things back together again. Prevention just doesn't come into it. It makes me angry but also upsets me that the government are bringing carers and mental health patients to their knees because saving monies have become more important.

I think in everyone's life at some point we all become a carer to some degree because a member of the family needs support when they become ill but these days it's all about how little can we get away with in not spending rather than thinking about that person as our own member of the family. It's not only the system and resources that are broken; I feel the system has forgotten the meaning of providing care; that human beings should be more important than monies. Monies can be made up one way or another but a human life can't be put back together again when it's left neglected for too long.

For instance, Brexit doesn't bother me one way or another. There was one mp I heard who said they wanted to avoid a no deal Brexit so that they didn't cause unnecessary suffering to the public. I feel they can't cause much more anyway after all these years. What does bother me is the monies spent on Brexit and the attention it's taken away from all what I see as the more important issues like providing resources for the public to ease their burdens. There is an easy way to resolve it but anyway, that's another moan. I'm not interested in politics, I'm just interested in building a more caring society so we all benefit from it.

My feeling is if there are no monies available to care for our own relatives, wouldn't people be prepared to pay more while they're working so that everyone, including themselves, could receive the care they will need in the future? Shouldn't we try to create a more caring society where we look for ways to look after each other first before we start working out how to afford it?

I know a lot of people involved with dementia in one way or another. I've seen how it affects people - carers and sufferers. They talk about being dementia friendly but why not disability friendly? Why exclude other disabilities? Whatever illness people suffer from, it's all terrible to see and the emotional suffering that carers have to go through too. So many carers end up on anti-depressants because they're the "easy" solution instead of providing the support they need. Ad's cost money too just as much as providing support.

For instance, I sometimes wonder is it easier to look after someone with a physical illness or someone with a mental illness, and the answer I always come up with is that they affect the carer the same - just with different demands on our emotions. I push an elderly friend of mine in his wheelchair every week. He loves to join our group on our walk and yet he can't walk himself but just the getting out and mixing with others really benefits him. For me he is no burden but I'm sure to his wife he must feel hard work. My hard work starts as soon as I walk through the door but the work is completely different from his carers but both of us suffer in our caring roles. I feel for every carer, especially when it involves someone they really love. It must be heartbreaking. I remember how my mother was after 59 years of marriage when my father became ill and I supported her and then again I supported her when she became ill. I don't think there's much I've not seen or experienced in a caring role. As you say, I'm not sure people really realise how it affects us unless they've been through it too. I often think those who put monies first should try living in our situations for a week or more to see if they still think the same way when the week is over. We could call it work experience.

I think we need a Moan Of The Day section. It could be very long.

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Moaning 1 week 5 hours ago #3217056

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I often wonder how Brexit will affect carers,

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