Developing ICT skills and networks of support.
How does being a carer impact on your health? From 9 to 15 June 2008 the 14th annual Carers Week will highlight the impact caring can have on carers' health and wellbeing. Has your health suffered as a result of being a carer? Do you think the government needs to do more to support carers?
Yes it does!
I suffer from anxiety and depression due to the pressures of bringing up a child with ASD.
I know all parents have worries but when a child can't stick up for himself, acts out of the ordinary and invites snide looks and comments, I become very anxious and quite honestly, a bit ratty! My son, although 13,can't be left alone for 30 mins while I pop out. He can't go out alone as he's far too vulnerable. I am with him all school holidays apart from the odd half day. I have a "worker" who takes my son out for 2 hours every 3 weeks - sadly I can't get a lot done in that time. My worker has been ill recently and I haven't had any time at all for 2 months as nobody else is available!
I can't book a dental or hair appt without finding out if my husband can be home on early or at least on time. I can't have a job other than a term time one as I need to have school holidays. To add insult to injury, although I build my life around my son's I DONT get Carers Allowance because I earn too much! Does the Government know that caring is everyday morning, noon and night? Do they comprehend how much extra effort it takes for carers to try and lead any kind of life?
Yes you can earn upto a set amount and still qualify for Carers Allowance, however that again imposes a condition on an already stressed parent. We need help, not hindrance! Being a carer is stressful, you constantly plan ahead to the smallest detail. Even on holiday I can't relax because I have to watch my son 24/7.
In summary I do honestly think that the Government get us carers on the cheap! Why? Because we love our sons,daughters, mums, dads and sisters and brothers and we want the best, but that does mean our health, both mental and physical will inevitably suffer.
Yes it does
I have a been a carer since I was 21 for my son Matty who will be 23 in July. Its been hard. My son had a stroke recently and the worry of him overcoming his stroke nearly finnished me off. However I am fighting back all those years I have put in as a mother and carer and will not let anything get me down From being withdrawn and depressed, anti-socialable and anxious I have become a trojen, a fighter and the strongest woman I know. I have beaten Cancer and have stopped smoking, changed my attitude to life and believe in making the best out of mine and Mattsl life. We have lots of fun days out and we thank our lucky stars we are both still here to enjoy eachothers company. So you see life may seem so difficult at times but it's all worth the smiles and happy times in the long run. Chins up and chests out! :) karen and matty xxx
I would have to say yes, although not always in a negative way. I have, along with my wife carered for my autistic son since birth, although we did not have a confirmed confirmed diagnosis until he was about 12.
I find that I have to fight in every walk of life for my son to be included, and have on a nulber of occasion had to resort to the law to achieve this. I do become very tired at times of continually taking on the powers to be. This causes me to be irrratble at times, however, I have the most rewarding relationship with my son, especially when I see him smiling and enjoying his life.
I and my wife facilitate as much as we can for him, but as with all walks of life money is a continual worry. His needs always take president over mine or my wifes. The way I look at it is; my wife and I brought him into this world, therefore it is our responsibility to mke sure that he has as complete a life as is possible. It's hard work, but the rewards are greater still.
My main fear is how he will cope when we are no longer around. My wife and I are working to put as much support for him in place before the inevitable happens. We are using the system to benefit my son, and at the same time facilitating as many opportunities for him to build his confidence and independence as we can.
It's a long process and, for my son at least, has to be done in stages. However, I think we all know the rewards of seeing our young ones acheive their goals is overwelmingly rewarding.
My Wife and I do not set the goals, we encourage my son to set his own. We feel the more pressure we can take off of him the better he acheives. He deals with the pressure of life in his own time, not at a time dicated by general society.
I get very angry with people that try to bully my son or demean him in any way, and will put those that try very firmly in their place. What annoys me is that we should not have to do this. In my eyes everyone is equal regardless of ability or diability. Sadly society does not see things this way.
So in answer to your question, yes being a carer does affect my health. But we soldier on, we must cos no one else will!
Yes, it affects all aspects of well-being. Who knows what my health would have been like now had I not been a parent carer for 18 years, but I do know that it has affected my work life and social life - both non-existant! As a single parent for the first 5 years I was unable to work as I was on call 24/7, now I can only take short-term contracts as life is so uncertain. A social life is impossible, who wants to make friends with someone who has to put the cared-for first, and it's almost impossible to get reliable & trustworthy "babysitters" for a teenager! My only friend is my husband, who's fantastic, but we could both do with a wider social life & outlook.
I'm not sure if I would be in the state I get in if life were different. In most aspects I feel very lucky to have such a good life in that I have been able to home educate my 2 special needs children from 7 years old and from preschool age as well as their older brother from 13. I have learnt so much from them all. I do however seem to get nervous shakes which have come on in the last 4 years. Vigourous exercising daily over the last 6 months helped but I find they are coming back now. DH (dear husband) and I get tired and emotional with battling to get help and support that we need. I identify strongly with the worries for when we arn't around and I think this instigates the nightmares and depressions. I also find it a strain that if I am feeling low my DD(dear daughter) picks up on this and gets very low herself. It is then an added burden of trying to keep my spirits up.....
Love and best wishes to all x
I think carers have a responsibility to themselves as well as their carees, and should take time out from their charges from time to time if at all possible.
can i just say that i thought it was just me that got low sometimes, reading the posts i think thank god i am not going mad and can have an off day if i want to,
i do not have many off days do not have the time to but reading what other people have said makes me understand i am not alone in how i feel.
I have recently joined the forum. My daughter is 11 and has just finished assessments for autism and we have to wait until Nov for a diagnosis. I myself have anxiety and depression. I must say reading the posts has made me feel stronger knowing i am not alone and that others have the same worries and feelings as me. My daughter is my world and i will do whatever it takes to get the best for her. There are some very tough days but she is loveable and funny in her own unique way. I am glad i found out about the forum because i feel i have somewhere to turn to when things get difficult. Hello and thank you!
hello, i'm new here and this is my first post.
I would say most definatly yes, I mean how can it not have an impact on one's own health? How on earth can you keep going, day after day, knowing that there is no light at the end of the tunnel and to be honest why on earth should I be cheery about it. I'm not cheery about it, truth told, the future scares me to death. I'm dealing with my sons mental illness 24/7.never having any stabillity in my life, never being able to make plans, never knowing from hour to hour what his illness will bring, how he will be, what minor thing will trigger him off or if this will be the day he kills himself.. It would be unrealistic for anyone to think that this would not have all sorts of negative health and social implications on me and those people surrounding both me and my son. it's all very well for people to say, you do a wonderful job you deserve a medal.. well fact is i don't want to be doing this wonderful job and I certainly don't want to have some silly medal for it. i'd much rather just be ' normal' His illness has changed from a positive, social, outward active, up beat person into a bitter, depressed anti social misery My once healthy lifestyle has gone . i'm full of aches and pains, i don't sleep too well and I break down in tears on a daily basis.and i'm so very, very angry about it all. I'm filled with guilt, loathing anger frustration depression. so many negative emotions that it's a wonder my body can stand the strain of it. Am I coming or going? i just don't know anymore. My GP feels i should be on anti depressants and even that makes me angry. Prop me up with pills why don't you so that I can prop my son up on his. I feel life is not worth it anymore. I have no life, I can't see how i can ever have a life whilst my son has no life and fighting to get help for him to have a life is a constant battle which only adds to my problems.... That is how I truly feel about being a carer, I hate it. it has made me ill...... And yet what do i do... I keep smiling, I keep caring, keep coping, keep my true feelings in for the sake of others... i go on living a superficial life on auto pilot. the house gets cleaned , the food get's made and the dog gets a walk ect ect. The job center keep on to me to go get a job coz being a lazy single parent isn't the done thing. Oh if only I had the luxury of being able to get out and work.. Just imagine, being able to do something as normal. So doe's being a carer affect your health? yes, It certainly has affected my mental health. - I think i'm turning into my son!
Thank you for your message and for taking time to post your experiences on the forum. I hope you don't mind me replying to your post, and I hope that my suggestions might prove helpful. You talk primarily about your son's mental health problems - does he also have a learning disability as well? If so, there is a new website focused on learning disabilities and mental health called Clear Thoughts - it might be helpful, or it might be nothing new to you - the focus is primarily support to the person with learning disbailities and mental health problems, rather than their families, but just in case the address is www.clearthoughts.info
But what about you? You talk about having no life, and living on a superficial level, and from what you say you have little time to focus on you and getting to do things just for you. Have you had or been offered a carers assessment? The Mencap guide outlines a little about the process and what you may get out of it http://www.mencap.org.uk/externallink.asp?id=2920 but at the very least this is an opportunity for you to get information about support that might be available. Might I also suggest a couple of mental health organisations who may be able to offer further information and support Mind are at www.mind.org.uk
and SANE are at www.sane.org.uk . There is also CarersUK who offer support to all carers www.carersuk.org.uk. Finally www.addiss.co.uk offers further information about adhd.
Many families talk about how joining carers support groups has been a huge help to them, and supported them to feel that they are not alone. If you would like to send details of the area in which you live, I can find out some information about groups in your area. You also mention that you have visited your GP and have been offered anti-depressants. Whilst this is one option to support you, your GP should also be able to refer you to counselling services if this is something that you think would be of more help. It can take some weeks to get a referral, so if you might wish to find a counsellor yourself the British Association of Counselling and Psychotherapy is a good starting point - www.bacp.co.uk
Whilst Mencap is an organisation that focuses on people with a learning disability and their families, I hope that my reply has been of some use....Best wishes, Lucy
hi, i have only just found this site this evening and i think it is a great site i wished i had been told about this site before. I thought i would live a comment about this topic, the goverment doesnt do enough to help people in our situations and it isnt just the goverments, supermarkets are one of my biggest problem about trolleys but thats a dfferent story. My daughter is 4 but has a developmental level of a 2 year old. I am unable to work i am a single mum her dad walked as he found her too much hard work. The goverment make me laugh they take off the money i get from my carers allowance from my income support which i think is wrong as my daughter has to have a lot of money spent on her in one week ie clothes as she falls every day at school due to unstability and she for school she has to wear bandana bibs which alone are
Hi Pinklady82, there is a lack of understanding out there about how families lives can be affected by their caring role, which is certainly reflected in the benefits system. Have you ever had a carers assessement as part of your daughter's assessment?
We have a son aged 23 years with LD and oppositional behaviour problems - it affects everything from the work you can do to whether you can have any time together as a couple. Our son is very attached to his home but does not treat his family with any consideration despite everyone always treating him well and thoughtfully. He has always beed resistent to the notion of independent living and has seen any time awu from home as being a punsihment -- even if it is a holiday with his best friend!! I am now exhaisted and the alst straw came the other day when he took without permission a newly acquired bike I had obtained and wrecked - nil remorse being shown and I am now on strike!!
Apologies for my appalling spelling
Welcome to the forum! Thank you for sharing your experiences. You don't say within your post whether or not you have had a carers assessment. Is this something that you have been offered or asked for? If yes, did it help? It might be that you can ask for a review of your assessment if you feel that your situation has changed, or that the level of support that you can continue to offer your son has altered. The Breaking Point campaign that Mencap ran initially in 2003 highlighted that as many as 7 in 10 family carers can reach breaking point, which means it is vital that you get the support you need, when you most need it. Please do keep us posted pippinpuss...
How could it NOT affect your health?
I have a son with severe learning difficulties, a mum with severe osteoporosis and osteo arthritis. During the last few years I've supported three more parents/in laws, now dead, between them there were strokes, bowel cancer, prostate cancer, Alzheimers, heart attack, and stroke, to mention just a few of the problems!
Soon after the third parent's death I was diagnosed with kidney cancer. Running around trying to do my best for them all, whilst running a business meant that there was never time to myself. When I wasn't caring or working I was just trying to catch up on the million jobs that were pushed to one side as a rule.
Just as I was getting better from my operation, my husband and fellow carer died suddenly from undiagnosed heart disease.
We both came to the same conclusion, that we lived too close to our parents. Each individual doctor and health professional assumed that they didn't need to do anything because there was a son/daughter nearby. They never ever saw the whole picture, or accepted that there were times we couldn't do what they wanted as we were already caring for someone else.
My son is now in "supported living". Even when I was on crutches unable to drive the care provider still expected me to attend meetings 20 miles away and got upset when I couldn't attend!
How could caring not affect your health?
hi, my son stuart is 25 and i care for him at home. he has severe learning dissabilities, speech and language problems and cannot read or write, he needs help with all of his personal care. i would say being a carer does effect your health both phisicaly and mentaly and i find the lack of public and proffesional understanding is the hardest thing for me to cope with. i too have suffered from anxiety and have felt very low at times over the years and still find dealing with social services and doctors very frustrating, i have had a carers assesment done 8 mths ago and i still have to keep chasing them up about it, my son has been on their files all his life but they still keep asking for more information, this time i am waiting for someone to come out to see wether he can sign his own forms even though i have had 3 other people here asking the same thing and filling in forms to say he cant, i know where the goverment could save some money !!. i havent asked for much over the years but i have taken advice to have the carers assesment done this time but the ammount of people that has come to my house and the paper work has been an eye opener yet again .
I've just read the last two posts in this thread from May and June this year and I just wanted to say that I know how you feel.
I've recently lost my dear mother and am now caring for my elderly autistic aunt (her sister) together with my own 12 year old autistic daughter who has recently been permanently expelled from her school because of her challenging behaviour.
However, despite all my family problems the thing that causes me the most stress and depression is the attitude of the so-called "professionals" who think they know better than me. Despite all my daughter's behavioural problems, anxiety, OCD, etc, all these "professionals" are concerned with is the fact that I use a wheelchair to transport my daughter around the shops and on buses. I have to use the wheelchair because she refuses to walk. Also, because if she were to walk she could run into the traffic and get knocked over. So, for her safety, I use a wheelchair.
The "professionals" make me sick. I am sick to my back teeth with them. They are supposed to be here to help people like me but instead they sit in judgement over me and talk about me as if I am an object of interest which they can study. I wish they could spend 12 years doing what I have been doing for the past 12 years. That would wipe the smug smile of their self-satisfied, self-righteous faces.
yes it does big time. i got so tired and run down that i ended up fighting for mylife and spent many weeks on life support as my body was too exhasuted to fight a severe infection. But as a parent/carer you can't phone in sick and spend the day in bed. you have to be 100% devoted them your family member, no matter what toll it takes on you